Please help us spread some joy to families going through tough times this holiday season. We miss Ada so much and know that she would want us to spread joy in her memory so our non-profit (adas-spark.org) is organizing a toy drive for our local hospital. Click the link below or read on for more information. Thank you!
Ada’s Spark Toy Drive Benefiting AFCH (2024) https://www.amazon.com/registries/gl/guest-view/1K3LZR7KBINRX
Gifts need to arrive by December 4th
Amazon items will automatically ship to the Swenson’s house
Message us here or reach out to https://adas-spark.org/contact-us/ with questions.
There is a printable flyer attached to this post if you want to promote this outside of social media.
Ada loved the hospital. This was not only due to the incredible loving staff, but also due to all of the fun toys, games, and activities she was given. She relapsed just before Christmas 2022 and was readmitted to American Family Children's Hospital (AFCH) in Madison. Generous gifts she received at the hospital shed some light on the darkness during the Holidays.
We want to pay it forward in her honor by hosting a toy drive for AFCH in Madison. This list includes toys that are in high demand that the hospital requested and toys that Ada loved and helped get her through some of the toughest days. So if you are looking for ways to help others who are going through some tough times this year, please consider participating in the 2024 Ada’s Spark Toy Drive. We will have it open until December 4th so that we can deliver all these toys to AFCH before the holidays! No kid should have to spend the Holidays in the hospital but let's show them that they aren’t alone! Thank you!!
Joel and I are beyond excited to announce the non-profit that we established to honor Ada: Ada's Spark Inc! Ada’s Spark is dedicated to illuminating pathways of hope and healing for children and families affected by leukemia and childhood cancer. Through funding pioneering research, advocating for equitable access to care, and providing compassionate support, we strive to honor Ada’s memory by igniting positive change and fostering resilience in the face of adversity. Learn more at our brand new website!
Our first big fundraising event will be on (what would have been) Ada's 6th birthday, June 8th, 2024 in Waunakee:
Ada's Forever 5K (with a 1-mile walk option). BE SURE TO REGISTER BY APRIL 30th! All proceeds will go toward Ada's Spark.
https://adas-spark.org/adas-forever-5k/
Anyone, any age, are welcome to come. After the run/walk we will have kid-friendly activities and snacks. If you register by 4/30, you will also get a t-shirt!
Joel and I are eternally grateful to our loving, supportive, brilliant, and hard working board members for helping us get this off the ground: Luthien Niland, Kelly Teske, Lauren Walsh, Mike Poe.
Thank you all for your continued support. Lets help end childhood cancer!!!
Tami Swenson and I are excited to announce that we are hosting a 5k run and a 1 mile walk in Ada's honor to raise money for childhood cancer research and to support children and their families affected by cancer: "Ada's Forever 5k". We have many, many details to plan still but wanted to share that it will be the morning of June 8th, 2024 (which would have been Ada's 6th birthday) in Waunakee. If you can't make it to Waunakee we will also plan a virtual option (basically you just walk/run where you live). If you want to help plan or know someone or a company that might donate equipment (e.g. bounce house), time/talent (e.g. facepainter), supplies (e.g. food, drinks), match donations, etc please reach out to either Tami or me. We are also in the process of setting up an IRS-qualified 501(c)(3) public charity so donations will be tax deductible for organizations and individuals. We look forward to seeing some of you there!
Oops, meant to attach pictures to the previous post, will put them here instead!
Its been over a month since we lost Ada. We have spent the time starting the process of grieving, having some events in Ada's honor, and making some headway on how we want to honor her moving forward. Most of all we have been missing Ada. Some days/night/early mornings are tougher than others but on a whole we are slowly trending in the right direction. We keep hearing from others living with loss that the grief comes in cycles but that eventually you are able to remember the happy times with more joy than sorrow.
On August 12th Tami, Oliver, Ellie, my parents, Tami's parents, my brother's family, Tami's sister's family, and I went to the outdoor section of Ada's beloved daycare, Inspire. Tami and I read a eulogy that we wrote, and our dad's shared some memories and wisdom, then we released some butterflies. It was a beautiful moment as we stood on top of the hill overlooking where Ada first learned to ride a trike, where she frolicked with friends and where she did a lot of learning and loving. Afterwards, Ada's cousins enjoyed some of Ada's favorite activities while the adults supervised, shared more stories, cried, and laughed. The eulogy that Tami and I wrote and read is below. It was hard to read but Oliver ran over on his own accord to squeeze our hands to support us. Ellie was just the right amount of cute with random interruptions to help us get through it as well.
[Spoken by Joel] “A child can teach an adult three things: to be happy for no reason, to always be busy with something, and to know how to demand with all his might that which he desires.” – Paulo Coelho. Ada did all three with style. She was such a big personality and was never shy about asking for what she wanted. Her teachers and caregivers used many words to describe her including: happy, caring, energetic, curious, smart, limit-testing, strong-willed. We would describe her as love, joy, and playfulness personified but we don’t really know how to describe something we loved so much and so hard. When we married the love and joy in our lives increased, when we had Oliver it increased more than we could imagine, Ada and Ellie each made that joy expand exponentially again. The love we have for our kids is limitless and forever. Losing Ada is more painful than we could ever have imagined but we will always have more joy in our life for having known Ada.
Since Ada was born she did everything to keep us on our toes including bending in half while asleep and sleeping face first into her crib! She enjoyed giving the best belly laughs, riding on a roomba vacuum, making faces, dancing in nature, playing in the rain and mud, and when Ellie was born Ada turned into a little mom whether Ellie liked it or not. Once we were out on Papa Swenson’s pontoon boat on Lake Mendota, we were deciding if we wanted to jump into the cold green water when we noticed Ada climbing down the ladder into the water, this made her wimp of a Dad jump in quickly! Ada had such fun ways of saying things: oatmeal was meatmeal, Oliver was Aldo, water towers were water mountains. At dinner every night she would lead our family ritual by asking everyone “what are you grateful for”, we said many times that we were grateful for family and her not being physically with us doesn’t change that.
After Ada was diagnosed she was in the hospital for most of 14 months but the fun for her did not stop. Her body and spirit were remarkably strong, we would be told that she would likely feel pretty bad and have low energy but her body was spared many of those common side effects and her spirit fought so hard against them when they were present. We have innumerable stories of her crying in pain or having a fever and many times just metaphorically (and sometimes literally) yelling “I just want to play”. She would then proceed to do so. One such story is that Ada spiked a high fever but refused to stay in her room, she wanted to go for a bike ride so we packed up our things and headed off, after around 10 minutes she stopped, threw up in a bag and just kept going. Shortly before Ada passed away I was called and told to get to the hospital ASAP, the medical staff thought that the end was near. By the time I got there Ada was insisting (to the nurse’s dismay) through pain and countless medicines that she wanted to go to the playroom. Ultimately Ada won the battle of wills and made a mess in the playroom.
[Spoken by Tami] Ada loved to play doctor at the hospital with her dolls, sit at the nurses station and type away “charting” on a computer, she had her own office (the family consult room) where she would talk on the phone, chart, give her parents shots, or give Chester his medicines. One time Joel told her to check Chester for a blood return, she looked at him and said “Daddy, Chester isn’t real”. Ada’s quirky personality was further demonstrated when she met sassy robert. We were walking through the hallway in the hospital when she stopped a big burley tattooed biker man and demanded to know his name. He said, “Robert…”. She said “you are a sassy Robert” and they both continued on their way…
When Joel or I stepped out of the room, she would say “hug and kiss” and spread her arms open. At night she would ask us to stop dinosaurs and chewbacca at the door, she ultimately became convinced that our farts kept him away.
Ada, your spirit will stay with us forever and the pain of losing you will forever be here as a reminder. A reminder to never take life for granted. We don’t know how long we will be here as we have learned all too well that everything can change in an instant. So be like Ada: take chances, be the change you want to see in the world, fight for what you want and what you need, be fiercely curious, tell your friends and family you love them, treat each other with respect, and just enjoy life. Ada, you have taught us that. Whenever we face a difficult decision or moment we will remember you and ask ourselves, ‘what would Ada do’. If you do anything less, you know Ada would wag her little finger at you and say “no no”. So let's honor her and live life how she did and how she would want everyone she loved to. She may be gone but she is far from forgotten.
One of the last things Ada said to us was “Thank you for loving me”, thank you Ada for loving us and letting us love you. The very last thing she said was “Lets go wake Ellie up” which to us indicates that she was thinking of others and wanting to play with them right up to the end. We love you forever.
On August 13th we had a celebration of life for Ada. We are so grateful to friends and family who helped with activities/food, purchased some of the supplies, monitored some of the stations, etc. Most of all we are thankful to everyone who was able to attend (we know others wish that they could have and we totally understand). It meant a lot to have family and friends come together from near and far to honor Ada and also show their support to our family. Ada would have loved the event. It had: nail painting & tattoos, sand art, slime, play-doh, rock painting, a bounce house, bubbles & chalk, yard games, photo boards, polaroid-like camera to take pictures, photo/art wall, slideshow, disney music, memory book, capes, and "fight like a kid" magnets. Most important to us and I'm sure Ada, was the lovely people who were all there. I know that Ada would have been running from one activity to another, playing mother to the little kids, and showing the big kids that she could do everything that they can do. We are happy that Ada's friends were able to do the above for her in memory of her. Tami and I only wish that we had more time to chat, cry, and laugh with all the amazing people who showed up. Tami and I poured a lot of love and tears into organizing it but it was a labor of love. Thank you all who were there physically or in spirit. We love you all.
Every family at the Celebration of Life received a magnet with a picture of Ada and the saying "Fight Like a Kid". The magnet station had a sheet of paper explaining what that means to us:
Ada was the epitome of the saying “Fight Like a Kid”.
We think it's a good way to live.
Ada biked, ran, laughed, and played through 14 months of grueling cancer treatments. She didn't let pain, nausea or fevers get in her way. She accepted what was thrown her way, including love and help, and found ways to make life fun and entertaining. She taught us how to live a long standing family mantra of ours: “Life isn't about waiting for the storm to pass...It's about learning to dance in the rain”.
Ada was going to do great things and make the world a better place. She can’t do that with her body anymore, so we ask that you all carry her spirit onward. Put this magnet somewhere you will see it every day and spread her joy and caring throughout your communities and through your actions: "How can I be a little more kind/cheeky/helpful today? How can I make the world a better place in her memory?". Don’t take anything for granted, don't let anyone hold you back, do what makes you feel fulfilled, love and help others, and enjoy every single moment.
Fight (through life) like a kid in honor of Ada!
*If you did not get a magnet, let us know! We have lots of leftovers!!
On August 17th, Waunakee unveiled a mural for those in the community who lost a loved one at an early age. It is a large butterfly with smaller butterflies surrounding it. The smaller butterflies are the names (including Ada) of lost but not forgotten community members. It was a nice event with food, music, inspirational speeches, a reading of all the names, and a butterfly release. They also gave all the families a butterfly chrysalis. Our butterfly emerged at our house on August 22nd, exactly 1 month after Ada's death. Oliver named the butterfly Ada and released it in our backyard where she eagerly flew off into the world.
This past weekend some of our amazing neighbors invited us to their cabin up north and absolutely spoiled us, not letting us cook or clean and helping out a bunch with the kids. It was the most relaxed Tami and I have been in a very, very long time. Tami and I had been keeping our social circle extremely small due to COVID and then Ada's compromised immune system so on top of all the great food and amenities (boat, jet ski, kayak, speakeasy, etc) we most appreciated the good company. So if you are reading this lets get together and do something fun to help us all heal!
When Ada was alive we had a dinner time tradition of going around the table and everyone sharing a "rose" (what you are grateful for), a "bud" (what you are looking forward to), and a "thorn" (what you are sad about/worried about/etc). Ada used to lead the tradition and wouldn't let anyone off the hook. We continue this tradition in her absence and even though our thorns are sharp enough to pierce hearts, the roses and buds that you all have provided and that we provide each other propel us to fight for joy, love, and hope to conquer sorrow. This has been a heartbreaking journey but countless people (many we don't even know) have loved and supported us. Think about that next time you see only hate and fear in the media, the world is mostly full of loving, amazing people. Please keep spreading that light and love throughout your communities.
Hi all,
We are all doing ok here, as well as can be expected. For us its been true what they say, that the sorrow comes in waves. We've been making a point to get outside, spend time with others and find joy throughout the day. We continue to be overwhelmed by the support from you all and our community. Your messages of support, your hugs on the sidewalk, the special moments/experiences folks have provided for our kids in the past week, friends/family inviting us over and spending time with us, etc has helped more than you know.
Tami and I have been planning a celebration of life for Ada. All of you are more than welcome to stop in anytime on August 13th between 1:30 - 4:30 at the Waunakee Village Center (333 S Madison St, Waunakee, WI 53597). There will be light snacks, lots of pictures of Ada, and many stations of her favorite activities. We know that there will be sad moments as we think of Ada not being able to join us in those activities but we hope it will be a happy day as we celebrate her wonderful but short life. You are welcome to wear whatever but we suggest wearing colorful fun outfits and dress your kids in something they can get messy in. :)
Also on August 17th Ada's name (along with others) will be read as she has a butterfly painted in her honor in downtown Waunakee. It is a mural being dedicated to those in the community who lost a loved one. https://www.nbc15.com/2023/07/09/waunakee-mural-honor-lives-lost-loved-ones/ We can share more details on the ceremony when we receive them.
In lieu of flowers please consider donating blood, signing up to be a bone marrow donor at bethematch.org, or support the UW Kids Cancer Research Fund in her name here: http://give.wiscmedicine.org/AdaSwenson
Ada's obituary: https://www.cressfuneralservice.com/.../adalyn-ada-swenson
As always, thank you all for the support you've given us and continue to give.
Ada died peacefully this morning at 2:47AM. She was cuddled between Tami and me and hugged and kissed her as she took her last breath. Over the past few days she has been surrounded by family and Tami and I have not left her side. We got so many cuddles and kisses in. Her pain was uncontrolled several days ago but thanks to copious amounts of medication she has been peaceful for a bit now. Even when she was in pain and we were told her death could be imminent she insisted on being pushed around in her wheelchair and handing out pez (people tried to say "no" to the pez but she wouldn't let them) or going to the playroom. As you can imagine Tami and I have been telling her that we love her a lot lately. After one of those times Ada said "thank you for loving me" then she said "I love you too". A little later we both got big hugs and a kiss on the lips from her. Words can't capture the love and joy from those moments but we will carry them in our heart. Wednesday night she got sooo much morphine (and other drugs) that we thought we wouldn't have any more lucid moments from her, as we all know Ada is a fighter. She woke up Thursday morning flitted her eyes open and said "Glad that you are here". Late afternoon Thursday we tickled her and she said "Lets go wake Ellie up". Multiple times over the past few days different doctors and nurses have said that they've never seen someone fight so hard or come back from the brink so many times...typical strong Ada.
She and we (and all of you) fought so hard over the last 1+ years. Ada got the best and most care that her body could handle. We are indebted to our local medical professionals/experts as well as all the world experts who consulted with us and/or treated Ada. As far as I'm concerned Ada fought and won all the battles that were in her control. She never felt sorry for herself, never stopped playing, never stopped bossing the nurses around "her feistiness makes us laugh", never stopped caring for others (especially her baby sister and her big brother), never stopped goofing and laughing.
Ada had a good life, with lots of friends, family, joy, and fun experiences. Since her diagnosis in May of 2022 she has spent around 250 days in a hospital and closer to 300 away from home (i.e. not inpatient but out of our home for care). For the vast majority of that time she was having a ball including laughing, playing with nurses, playing with hospital dogs, having school in the hospital, finding the messiest toys/paint/sand and enjoying them, exploring hospitals by foot/bike/wagon/toy fire truck and talking to strangers, playing with us and making us smile, etc. This past year + was undoubtably hard but Ada taught us how to live a longstanding family mantra of Tami and mine “Life isn't about waiting for the storm to pass...It's about learning to dance in the rain.” Your support and encouragement made this possible. Thank you all from the bottom of our hearts.
Ada wouldn’t want this to be a sad day but it will have sadness, I want it to have joy as well. I want to celebrate her life. When Tami and I married, the love and joy in our lives increased. When we had Oliver it increased more than we could imagine. Ada and Ellie each made that joy expand exponentially again. The love we have for our kids is forever and despite some joy being sucked out of it today we will always have more joy in our life for having known Ada.
Please respond with a story of Ada that you will remember or a lesson that she taught you. It doesn't have to be long, eloquent, or profound. If you can't think of one today come back and leave one some other time.
We will share more details on a memorial service in the coming days but want to leave on this note. Ada brought so much joy and wisdom into the world. Her body is gone now but we are going to challenge ourselves and you all to bring her joy into the world with you. We know that there will be sadness and grief with us (and many of you) for the rest of our lives but Ada wouldn't want us to be consumed by it. She was going to do great things and make the world a better place. I contend that she already has and wants everyone to spread her joy and caring throughout their communities. Put a picture of her up on your fridge or write her name on a piece of paper where you see it everyday. Don't only look back on her life with sadness but when you see that reminder of her carry it with you into the world and think "how can I be a little kinder today, how can I help others, how can I make the world a better place in her memory". And finally, she has taught us to not take anything for granted. Live life to the fullest- don't let anyone hold you back, do what makes you feel fulfilled, love and help others and enjoy every single moment.
We all love you so much Ada, thank you for letting us be a part of your world for 5 glorious years.
-Joel and Tami
Another quick update...and one I've always dreaded writing. Nothing has worked for Ada. She received treatment through Tuesday of this week and then that night pain consumed her and the cancer came roaring back. Typically treatment would slow things down for weeks at a time but lately she has been blasting through treatments as fast as we can give them. We've tried everything and talked to all the experts, all that's left is to get her pain under control and enjoy the time we have left. It took a few days and LOTS of morphine (and other meds), but she is finally resting (here at the hospital in Madison). Based on this and her breathing patterns, we were told she has hours or maybe days left. We are spending every remaining moment just holding her and talking to her. She is comfortable and right now that is all that matters.
As always thank you all for your support and love, we've relied so much on all of you. We will provide another update in the coming days.
Love Tami and Joel
Right now Ada is sleeping very peacefully. Her will to play constantly amazes me so I thought that I'd share a few stories.
Today she received a medication (tagraxofusp) that she has never received before, there is a fairly high incidence of side effects associated with it so there were 3 doctors, 3 nurses, and a pharmacist all in the room or nearby to monitor her during administration. She was pre-treated with Benadryl (among other things) to try to minimize the chance of side effects. Around 5 minutes after receiving tagraxofusp her face swelled up quite a bit so they gave her more Benadryl (among other things). Many of you know that Benadryl makes you sleepy, Ada is also on several pain medications that make her sleepy, never-the-less her eyes fluttered open a little, she sat up (eyes mostly closed) and she was excited to have an audience in her room. She seemed a little unsure of what to do and was just sitting there with her eyes closed, she didn't want to lay back down so I went and got her one of her dogs thinking that she might want to show them that. She took it from my hands and with her eyes closed and face very puffy (still sitting up) she reached under the dog and turned on the annoying bark. Now when it barks its mouth also opens and closes so Ada asked for goldfish, she then shoved a goldfish in the barking mouth as it opened. Next, she pointed at one of the doctors and held out her goldfish, it was clear that she wanted the doctor to do it. She then proceeded to point to every person (seemingly with her eyes still closed and half asleep...not sure how she was keeping track of turns) and command them to feed her dog. Someone tried to go twice and was denied by Ada, after everyone had a turn she picked a few more lucky people (and good sports) to feed her dog on last time. After that was done she asked me for her make-up kit and pointed to the attending doctor, indicating that she was going to get her make-up done. The doctor was very sweet (and very brave) and let Ada put blush (or whatever the stuff that goes on cheeks with a fluffy brush is called) and eye shadow on her. Those are the kind of people that they have on staff here to let a half-asleep 5-year-old put make-up on them! After Ada was done she grabbed her magnifying glass and inspected first one cheek, then the next, then the right eye, and then the left!
Another quick story is that when Ada was home she had a lot of good times but her pain was getting bad at night the last few nights. She didn't have any IV meds available to her during this outpatient stay so Tami or I would administer oral pain meds and do our best to distract her while waiting for the meds to kick in (~20-40 minutes). I was trying stories, songs, jokes, etc and it wasn't working so I started singing a song from my childhood: "Riding down the highway, highway 54, grandma let a big one, it blew me out the door" (Ada stops crying for a few seconds to make a large fart sound) "the engine couldn't take it, the wheels they fell apart, all because of grandma's super sonic fart" (Ada again makes a large fart sound between sobs).
A few days ago we were at the hospital and Ada was in terrible pain, getting lots and lots of morphine, needing to go on oxygen (morphine can depress respiration), and generally scaring everyone (it was pretty serious). After several hours of this the pain was finally under control and Ada sat up and said "lets go to the playroom". The nurses and doctors thought that she should rest and were worried that the pain would flare up so they kept trying to distract her or asked if they could bring her toys, she said "no, I want to go to the playroom" so we went there and played! :)
Above are just a few stories showing how tough she is. She has not lost her wit, her desire to play, her desire to care for others. We love her so much.
As always, thanks for your continued support.
I want to write a quick update since so much has happened over the past couple of weeks. We managed to get Ada home for a few days (from Saturday through Wednesday this past week) and it was challenging, but also so great to have everyone home! She hadn't been home since April (when we left for St. Louis)! Our goal was to get her back at least for part of the day on Saturday so she could be part of her 'bedroom reveal'. This was through an incredible organization, Special Spaces. They transform kids' (with cancer) bedrooms into their dream special space. We filled out a questionnaire about Ada's favorites, met with a few people from Special Spaces and then let them design Ada's dream bedroom. We had no idea what it was going to look like and I was a bit nervous about how Ada would handle coming home for the first time in months to a new bedroom AND to a house full of people celebrating her and her bedroom. It went WAY better than expected. She opened her bedroom door and got right to work playing with Oliver and Ellie in her new beautiful bedroom. This included going down the slide from her bed, putting makeup on Ellie at her little table, painting everyone's nails, reading books, playing with new toys and befriending everyone else that was there. I can't believe how well she handled the big reveal after being stuck in a hospital for so long.
The few days at home after that were up and down. We knew getting Ada home was going to be a challenge because of her pain, nausea and just all of her medical needs. While she LOVED running around with Oliver, Ellie and the neighbors, her pain continued to get worse. She wasn't sleeping well at night (and of course, neither were we) and we just couldn't get her comfortable. It was heartbreaking to hold her while she was in pain waiting for the copious amounts of medicine to kick in. We ended up going back to the hospital on Wednesday and she started another round of chemo right away. She is now on Day 3 of the treatment and will get a new drug starting tomorrow. Of course there is the possibility of a miracle that this works and we continue to fight for her, but the reality according to experts across the country and our own reading of the medical literature, is that it is extremely unlikely to get her into remission. At least between the chemo and lots of morphine, her pain is better controlled. However, all of this is also making her very sleepy. For a while, when she wasn't awake in pain, she was sleeping. Fortunately, the last few days have been better. She has had more awake time and still gets enough energy to make her way to the play room, walk the therapy dog (Cola), feed her babies bubbles and play-doh, harass the nurses and walk the hospital hallways with her siblings and grandparents.
We fear what the next days or weeks will bring, but we know we are in excellent hands here. Our main goal is to keep Ada comfortable and happy for as long as possible. We don't know if that will be here in the hospital or at home. You all have been such an incredible support system. We appreciate everyone's kind words and checking in :)
It has been a tough few days. Ada's current treatment (which she started 11 days ago) is based on an in vitro drug sensitivity assay we did with her cancer cells which suggested that a 3 drug combo recently used in a handful of patients might be effective against Ada's cancer. While her cancer was knocked down for around a week it has blasted through the medications with the cancer again present in her peripheral blood. At this point we've exhausted all typical AML treatments and the relevant clinical trials. Her cancer is like her, insanely tough and resilient. One doctor said that it is the most resistant AML that he has ever seen. In addition to our amazing team at UW Health we remain in contact with experts throughout the country. There is one more combination of treatments that we want to try if her little body is up for it. The past few months we have started to see the cumulative effects of >1 year of different treatments. Right now she still has more good time in the day than bad time but it's heartbreaking to see her in as much pain as she is and that ratio is headed in the wrong direction.
We continue to try our best to enjoy the good times and make her day as good as we can for her. Highlights include lots of visits from her siblings, visits from her aunt, uncle, and cousins from Florida, visits from family friends and former teachers, visits (and tons of help!) from the grandparents, Ada demanding daddy put a squish mallow on his head and walk around the hallways ("I'll hold your hand so you don't run into anything"...it was pitch black and I was also helping her push her IV pole), Ada being reunited with all her amazing health care providers at her "home" hospital, a syringe painting party in the playroom, lots of goofing around in the playroom, making her barking dog eat goldfish (unfortunately the soundbox still works), making her baby alive doll eat clay and watch it poop it out, getting birthday cards from what seems like every student and staff member at her former daycare (Inspire), etc.
We couldn't focus on her and our other kids as much without all your continued physical and virtual support so thank you all!
Wow, it has been a while since I have written an update here. I wish I had more positive things to say except that we are headed back to Wisconsin either today or tomorrow and unfortunately it's not because the treatment here worked. It's because it failed. While Oliver's NK cells initially knocked down Ada's cancer, it wasn't enough. The cancer remained relatively steady the following few weeks. Ada started to be in a lot of pain (presumably due to the cancer and inflammation) so we started some more chemotherapy 2 weeks ago. The idea was that what she started would not affect the NK cells but after 2 weeks of the chemo it was obvious that it wasn't doing anything even for the cancer. So then we decided to give her another chemo to make Ada more comfortable, but at the cost of affecting the NK cells. She got a dose of cytarabine a few days ago. Between that and the changes in pain meds, Ada has been so much happier and more comfortable the past few days! It has been a really tough few weeks seeing her so miserable so it has been a huge relief seeing her perk up lately. It also helps that we will be getting a medical flight directly from St Louis to UW and she is really excited for both the fun transportation and to see her old hospital friends (medical staff).
When we get back to UW hospital we will be starting another treatment consisting of three drugs that are typically used for acute lymphoblastic leukemia (not AML) but there are some data suggesting it could work for Ada's specific AML. At this point we are just willing to try anything with the very small chance that something works. On the bright side we will all be back in the same city again. Oliver gets to go to summer school and Ellie will have some normalcy being at home. Since mid-April I have only been home for 2 weeks so I am looking forward to not living in a hospital room and getting to sleep in a real bed!! As always, thanks for everyone's positive thoughts and check-ins. If you feel like you want to do more, we have opened up the meal train again (see the ways to help tab up top).
I almost forgot to mention one of the best things that happened while we were in St Louis. Allie, the amazing child life specialist here, helped put together a birthday party for Ada at the hospital when both Oliver and Ellie were here. All Ada wanted was Chewbacca to attend her party. And Allie found a way to make it happen!! Chewbacca, Boba Fett, and a few other characters showed up and played pin the horn on the unicorn and helped us celebrate. Chewbacca even held up the pinata for us! It was an incredible and very memorable experience!!
Hi all, (Joel here, I accidentally posted under Tami's account)
Its hard to believe that its been a week since my last post. For roughly a week from the date of the NK cell infusion Ada had been feeling very, very crummy. She needed to go on oxygen once and was generally lethargic, cranky, achy, and not feeling well. Thankfully Tami's parents were there for part of that time span to help Ada and Tami and to give Tami a bit of a reprieve. I came down Tuesday to switch with Ada and Tami had succeeded in making Ada feel better. Since I've arrived she has been happy with more energy but still has joint pain and general discomfort occasionally. As I mentioned in my last post, Ada's cancer had been doubling every day prior to the NK cell infusion, the infusion killed off roughly half of the cancer in her peripheral blood (Oliver teared up and was very happy/proud of his donation when Tami told him this) and since then the amount of cancer in her peripheral blood is still holding relatively constant (the cancer growth appears to be roughly equal to cancer destruction). We are hoping that the NK cells "expand" (i.e. multiply) and start to "break through" the cancer but are worried about the cancer "breaking through" the NK cell-mediated destruction. Every morning we wake up and wait for her lab results hoping that they trend in the right direction.
In the meantime we do our best to enjoy the times when she if feeling well enough to play. Ada spends her days doing occupational therapy (i.e. playing games to improve/maintain fine motor coordination/strength), physical therapy (i.e. playing games to improve/maintain gross motor coordination/strength), school (working on her letters, numbers, counting, logic, memory, etc...school is probably her favorite!), playing with child life (i.e. messy things that make Ada happy), going for bike rides in the garden, bringing her babies to the garden, finding gnomes in the garden, racing her racecar around the room, playing doctor on me or her stuffies pillaging medical supplies from unsuspecting nurses, looking out the window at traffic (lots of ambulances and school buses), resting in be watching her tablet or playing games on it, etc. My parents arrived today for a long weekend visit and Ada and I were both very happy to see them!
As always, thanks for everyone's support!
-Joel
If you read this whole post you really need to find some more hobbies :). I'm just joking, thank you all for your support and please forgive the long and brain dumpy (and not proofread!) nature of this post.
We have been here for about 3 weeks now and Ada has been isolated to her hospital room for 19 days (that's 456 hours of being confined to a small room with a very very active little girl). She continues to test positive for rhinovirus, which is (mostly) fine for her and hasn't resulted in any complications, it just could be dangerous if other kids around the hospital get it. However, after asking/ begging for a way to get her out of here, we finally got approval for Ada to go to the hospital gardens. She is allowed to do this for up to 2 hours/ day and before she goes to it, she is required to bathe and get fresh clothes on, mask up, and sanitize frequently. So it is a process, but so worth it! She has loved getting to run around and play tag, ride her bike and breath in some fresh air!! Despite being cooped up, Ada continues to be in high spirits and loves playing with anyone that is willing to give her their time. She has really gotten into playing with dolls, especially barbies, and she pretends they are sick and she is the doctor. Sadly, she knows all of the appropriate terminology for this kind of play. However, I am not sure what kind of doctor she considers herself to be since she really enjoys frequently injecting water, magic beads, perler beads or really anything small into the mouths of her baby dolls. Then its a fun game to see whether or not the fluid or object comes out the other end... whatever makes her happy. She is also kept busy by physical therapy, occupational therapy, dance therapy, art, school, child life, music and visits from brave volunteers. Again, anyone that is willing to help out with the baby injections, making slime, blowing up water balloons, or creating a mess in any fun way has been a wonderful distraction to her.
Medically, Ada is doing ok. Put simply, this cancer is aggressive and by this point we know that. Ada had 5 days of intense chemotherapy just under 2 weeks ago and at first the cancer disappeared from her peripheral blood which we were relieved to see. But it came back within just a few days and it steadily has been increasing. We know that the cancer is not responsive to chemo and that is why we are here. Apparently this is ok for the next step of treatment which is on Tuesday/ Wednesday of next week. Those are the big days of this clinical trial. On Tuesday Oliver will have his white blood cells collected and that will take anywhere from 4-6 hours!! He will have 2 IVs, one in each arm, and blood will be taken out of one side, will be spun down to remove the white blood cells, and then the red blood cells will go back into him. From this, Ada will receive two treatments. Just after Oliver's collection, she will get his lymphocytes. Then the NK cells will be processed (activated) in the lab and she will receive those on Wednesday. And then we just wait and see what it does to the cancer. Unfortunately there is no way to predict how or if the cancer will respond. They have had some pretty sick kids respond really well to this kind of treatment so all we can do now is hope.
Oliver and I drove down to St. Louis yesterday. He had a quick appointment and now we just need to hang tight until Tuesday. Joel and I are enjoying taking turns spending quality time with Ada and Oliver (and sometimes both at the same time!). We are just missing Ellie, who is back in Wisconsin with grandma and grandpa. In just the past 24 hours, Oliver has spent time at the hospital chasing Ada around the garden and going to the Science Center, planetarium, and the Magic House (I guess its just a crazy children's museum). We finally got a room at the Ronald McDonald House, so we will be "moving in" there tonight and exploring that area which is less than a 10 minute drive from the hospital.
Ada will start the clinical trial here in St. Louis tomorrow! We arrived here on Saturday with the whole family and got to enjoy a weekend together at the zoo, eating ice cream, and exploring some of the neighborhoods. On Monday morning, we went to the St. Louis Children's Hospital to meet the doctors for the clinical trial and sign some consent forms. So far all of the doctors, nurses and staff here are incredible. Ada took to everyone immediately and loves playing with anyone that will give her just a little bit of attention. Given Ada's recent infections (which have luckily cleared) and her suppressed immune system, she was admitted on Monday and will remain inpatient through the whole trial (about 7+ weeks!). To make matters worse, she tested positive for rhinovirus (common cold) and that means she is isolated (stuck in her hospital room) until she tests negative again!! It makes sense since we are in the bone marrow/ cell therapy hallway and all the kiddos here are immunosuppressed. For those of you that know Ada, you know that this is torture for both her and whoever is stuck in the room with her! Luckily they allow caregivers to leave the room so I have been taking full advantage of that and getting out for lots and lots and lots of runs/ walks. There is a beautiful and HUGE park right next to the hospital with miles of running trails, a zoo, museums, lakes, a science center and more...and the weather has been perfect. So when I am able to get out of here I do and it is a good stress-relief.
I am not sure we posted about the details of the clinical trial, but it involves cell therapy with Oliver as the donor (since he was the bone marrow donor back in September). In short, Oliver will have NK (natural killer) cells collected on May 16 (from his arms), the cells will be processed in a lab to 'activate' them against leukemia and then they will be infused into Ada the following day. It is pretty amazing technology with promising results although its only been done with a handful of kids. The hope is that this knocks down the cancer enough to get her into remission so we can quickly move on to another bone marrow transplant with Joel as the donor. Ada will get more chemo before the NK infusion and that will start tomorrow. She had various tests done throughout the week and we are very happy to find out that everything looks good (no obvious infections besides the cold, heart function is good and her labs are generally ok). Our biggest concern was that her cancer would progress too much before beginning this treatment, but her blasts are holding steady. This puts her in a great position to begin treatment tomorrow. She will get 5 days of chemo in hopes that it reduces the amount of cancer in her bone marrow so there is room for Oliver's NK cells to come in and do its job (about 2.5 weeks after the start of chemo).
Oliver had his labs done on Tuesday and everything looks great! He is all set to go to be the brave donor. He is once again thrilled to potentially help out his little sister and he is even more thrilled to help advance medicine and be part of a phase 1 clinical trial. I like to think that his scientific curiosity and drive come from Joel and me. He loves to know all of the details about the process- where do his cells come from, how many are there, how do they work in Ada, what tests need to be done, etc, etc, etc.
Oliver, Ellie and Joel headed back to WI after Oliver's tests on Tuesday so Ada and I have been missing them a lot. She asks for everyone constantly and its really hard for her to understand that we are 5+ hours from home AND she is in isolation. The tentative plan is for Joel and I to switch every week or so. It is going to be a long 7 weeks, but we are so grateful that we are here and Ada qualifies for the trial. In the meantime, we are lining up some fall-back options if the trial doesn't work because we are certainly not ready to stop this fight and neither is she.
We are headed down to St Louis Children's hospital this weekend. Ada's cancer is still progressing rapidly so we don't know if she will be able to be enrolled (at some point further treatment does more harm than good) but we want to keep fighting. Ada is so happy and energetic despite everything happening. I know that I sound cliched with all my talk of dancing in the rain but we literally can't keep her in the house regardless of the weather. She has a central line that can't get wet so I pulled the cars out of the garage and she biked in circles with an umbrella. I also snagged a picture of her biking over rocks with storm clouds in the sky, it really epitomizes her battle.
Our dear friends at the Waunakee police and fire departments stopped by and gave our family a ride in a fire truck and police car! We also met the police K9, Ozzie. So many precious giggles from the kids. We don't know how to thank them for their time and memories they have given us all.
We keep meaning to write a long and heartfelt post to the numerous people who hosted a benefit for us at Wando's in downtown Madison but the hard to hear medical news keeps getting in the way. We will get to that post eventually but suffice it to say that we are beyond grateful to Wando, his family, the Inspire community and many others for putting on a fun (Tami and I have been hermits through all this so seeing friends was amazing) and successful fundraiser for our family. It has allowed us to focus on Ada's medical needs and minimizing the impact this has on Oliver and Ellie. We have no words to express our gratitude. We love you all.
Bad news, the most recent treatment didn't work. We found out on Friday. We had Oliver's birthday party on Saturday so we tried to focus on him and find joy where we can in our lives but there have also been lots of tears. From the start we've known that Ada's cancer was very aggressive and the chances weren't great. For awhile now we have been in contact with experts throughout the country. The consensus is that we have very few, if any, treatment options remaining due to the aggressive and progressive state of her disease. We are pursuing a few more options: one clinical trial, a pre-commercial (i.e. not well proven) screening platform to ID treatment options, and compassionate use of some highly experimental (pre-clinical) drugs. The clinical trial would be in St Louis and would use Oliver's natural killer cells to attack the leukemia cells...we will know if she qualifies sometime next week. If she doesn't qualify we will try to get compassionate use authorization to treat her at home so that we can optimize her time with family and friends. Hopefully she qualifies for the trial since she remains happy and playful. We continue to thank everyone for their support. Hug (in-person or virtually) your loved ones as often as you can.
I finally have a few extra moments to write about the blood drive that was held in Ada's name last Saturday. This was the first event of a very busy/ emotional/ exciting Saturday (April 1st). The blood drive started at 8 am so we were picked up by a squad car, fire truck and ambulance (of course we all piled into the fire truck!) at 7:30 am. At first Ellie refused to sit down and be buckled up but after some force and once the fire truck started moving she was sold! Of course Oliver was in his glory. And Ada just missed out on the event (she was admitted to the hospital the previous night with a fever). On arrival, Oliver was thrilled to see that Be The Match had a booth. He immediately stood next to them and eagerly answered everybody's questions about bone marrow donation. Oliver and Ellie enjoyed running around the fire station for several hours while people continuously flowed in to donate blood. Ellie quickly became obsessed with fire trucks and she must have spent 2+ hours hanging out in the different trucks at the station. And Oliver had a blast running around with balloons, eating the free food and playing with the Paulson boys (last year's blood drive was held in honor of Sam, who fought neuroblastoma). It was so wonderful to see neighbors, nurses, teachers, etc. If you missed out on this opportunity, please donate blood (or platelets!). It is so so important. Ada relies on weekly transfusions to keep her going. We are so grateful to not only donors like you, but also to our incredible community, the Waunakee PD, EMS and fire for all their support!!!
I forgot to mention the most important things! Ada is back to her spunky self, full of energy and running around the hospital. She has two viral infections and two bacterial infections that appear to be responding to treatment but we are likely in the hospital for another 10 to 14 days which may or may not run into another round of treatment depending on the bone marrow biopsy.
Hi all,
We have had a busy last couple of days and have a lot of things we want to share however it has been hard to find the time needed to give everything the justice it deserves so I'm just going to start chipping away (for those who work with me I'm taking the "first easiest step" :) ).
Our family is very fortunate in many ways so when Ada was referred to Make-a-wish we were at a bit of a loss. The kids have plenty of toys, we live right next to a beautiful playground, etc. We would love to travel and do a fun experience with the entire family but we don't know when or if that will be in the cards again and wanted something for Ada (plus the rest of the family) to look forward to. Ada doesn't really have things that she is always asking for or super excited. When she isn't talking about family Ada will mostly talk about her friends or teachers and fun things/memories they did together. She also loves imaginary play so after discussing a bunch of options with her and make-a-wish she is going to get this playhouse https://cottagekits.com/product/the-craftsman-playhouse-panelized-kit-with-floor-slide-4/ ! It is actually sitting in pieces in our garage right now, landscapers just finished putting in a gravel/limestone base yesterday. Ada (and Oliver) are very excited about it. It is nice to have a fun thing to look forward to. We will be sure to post pictures once its assembled. Additionally Make-A-Wish put together a video of some of Ada's friends and family sending her well wishes. Ada smiled so big while watching this video! Tami and I didn't solicit all the people we should have so if you are reading this and want to send us a 10 second positive message for Ada please leave us a comment/text us/email us and we will give you details. Make-a-wish said that it is very easy for them to add more videos.
We also want to post about the blood and bone marrow drive that was put on in Ada's name and an amazing benefit that Wando's put together to support our family. So many people continue to support and amaze us, thank you all!
Hi all, Ada had a great first day home, was very playful and full of giggles. Unfortunately yesterday she seemed off and spiked a fever. This can be quite serious since she doesn't really have an immune system so I took her to the Emergency Department at UW Health. They took great care of her, got some strong antibiotics in her (likely her bacterial infection in her blood is back), and got us admitted to the hospital. We got up to our room around 11PM last night. Ada didn't sleep great as having a fever is no fun and she was quite nauseous. Fortunately Grandma and Grandpa are in town so they relieved me at the hospital around 7AM so I could head over to the blood drive. We are glad that we got to have Ada home for ~1.5 days and our glad that we had some fun family time. Hopefully the fever comes under control quickly but we are likely at the hospital for at least another week now. As always, thanks for everyone's love and support.
- Joel
Hello friends! Ada gets to come home tomorrow!!! Today is day 20 out of 21 of this cycle for Ada. The bacterial infection in her blood has cleared and she has been her spunky fun-loving self for the most part these past few days. She still has bouts of intense stomach pain/nausea and generalized pain (likely from the chemo) but those things are trending in the right direction. Her favorite activities lately include playing fetch with the therapy dog, playing with sand and/or glitter, making slime, playing with shaving cream, visiting with her siblings, etc. We continue to be amazing at her resilience, curiosity, and strong will.
Regarding her future: basically the medicine she was on wiped out large swaths of her healthy and cancer cells in her bone marrow, now we wait to see if the cancer comes back or if she is in remission. It will probably take 1-3 weeks before she will have enough count recovery in her bone marrow for us to do another bone marrow biopsy to know if she is in remission, however we could start to see cancer cells in her peripheral blood much sooner if the cancer is not in remission. After the biopsy we have 3 potential next options that we are considering: 1. If she is in complete remission then we move as quick as possible to another bone marrow transplant with me (likely) as the donor. This would be in Madison and is the outcome we are hoping for. 2. If she only had a partial response to the medications in this round then we might do another round of the same thing. 3. If she didn't have a decent response then we will likely be pursuing a clinical trial, probably in St Louis (for ~3 months!).
We are very excited that she is coming home tomorrow even if the first few days of her home are always a challenge as she and the other kids adjust to all the differences. Ada will still have many medical needs at home but Tami and I are unfortunately becoming quite skilled at fulfilling many of those! Tami and I being away so much has been increasingly hard on Oliver and Ellie so we are planning on making the most of the family time that we will have. Ellie is talking so much and one very cute but heart-breaking phrase of hers is "Visit Ada hospital".
We continue to be amazing by the love and support we have received from family and friends (some we don't even know). Some of our friends have graciously organized, promoted, and are hosting a benefit for us at Wando's this Saturday (see the attached flyer if you know of someone who might like to go). Tami and I are extremely grateful and also excited to chat with people at the event (one of our first true social events in >10 months) even if Tami and I will have to mask to keep Ada safe so we will have to get creative about drinking a fishbowl! ;)
Other fun things happening soon: Ada's wish through Make-A-Wish was for a playhouse and that was delivered this week. We just need the snow to melt so that they can put in a base to set it on, then 198 simple install steps to put the playhouse together! Saturday morning there is a blood drive in Ada's name in Waunakee. A fire truck, ambulance, and police will pick up the kids (and hopefully me!) and drive them to the blood drive. Thank you to everyone who donates blood!
Happy almost-spring! Although it certainly doesn't feel like it. I came down with a cold a few days ago and therefore can't be at the hospital. I keep thinking I'll get better and it is just lingering! While I have enjoyed spending some quality time with Oliver (who started spring break yesterday) and Ellie, I am anxious to get better and get back to the hospital to be with Ada and relieve Joel (who has been stuck there since Wednesday). So, if anyone is looking for something to do, is in the Madison area, and is feeling healthy- stop by and visit Ada!
Ada is now on Day 9 of treatment. Part of the treatment plan is an oral chemo (Venetoclax). For this, she has to swallow several pills- many that are huge! It truly is incredible what this girl can do. I thought 'no way she is going to take this' and she has proved us wrong each and every day! Overall, this round has gone better than expected. She went into it with pretty high blasts (cancer cells) in her blood and she was just not acting herself (quiet and tired). However, within a few days of this treatment her blasts went down and her energy went up! Of course its hard to say if it is working and things could turn pretty quickly, but things are going in the right direction for now. This treatment has pretty much wiped out her bone marrow (again) and she has no neutrophils which makes her susceptible to infections. She is also very reliant on platelet and blood transfusions still. As far as her disease goes, we will know more once she has a bone marrow biopsy (maybe in a couple of weeks?). For now, we will enjoy her energy and happiness!
A couple of fun things that we get to look forward to- Ada's make-a-wish is one thing. She kept asking for a treehouse and well... we don't really have big enough trees for that. So after much back and forth with Make-a-Wish, we finally landed on a really cool playhouse that basically looks like a fancy miniature cabin. It even has a loft. It will be installed within the next week or 2. I am not sure who is more excited- me or Ada! This will sure keep her busy while she is once again in isolation for several months post-transplant.
Also, Oliver is thrilled to be collecting pop tabs for the Ronald McDonald House. His school is having a competition (teachers v students) to see who can collect the most. This kid is obsessed and incredibly motivated! He even walked around the neighborhood going door to door to collect tabs. So far he has collected about 7 lbs! To top it off, he got to be involved in the school assembly introducing the pop tab competition. He sat in front of his entire school and rattled off some pop tab facts. Did you know that approximately 63,360 pull tabs = 1 mile? He just asked me to remind everyone here to please drop off your pop tabs so the kids team can win!
Finally, we are so grateful to have such incredible friends and family. I truly can't thank you all enough. One such family has offered to host a benefit for us while Joel and I are on leave from work. If you are able, please join us on April 1st (after the blood drive) from 2-6 pm at Wando’s in Madison (I am not certain if Joel or I will be there…it depends on our hospital situation). I've attached the flyer with details to this journal entry.
As Tami mentioned in a previous post we had been continuing the experimental drug at home. We had some mixed signals last week that the medication might be working but over the course of this week it became clear that it was not and her disease was progressing. Our mantra has been to hope for the best but prepare for the worst so between consultation with MDs across the country, our amazing team here, and our own research we have another treatment plan lined up. Ada is being admitted today to UW Health to start the new treatment plan. We will hopefully know within a week or two if this new treatment is working. If it does we will proceed to a stem cell transplant, if it doesn't we will likely try a clinical trial in St Louis. Going from one treatment to another to try to get her into remission has been tough on her and its hard to see her more tired than usual. That said, she is still spunky and will have bursts (or an afternoon) full of energy.
We do feel fortunate that we got to have the whole family under one roof for a bit and tried to cram in as much fun as possible. She had a few outdoor playdate and mostly loved playing with Oliver and Ellie. In addition to the Police station and Fire station tours Ada also got a tour of the Waunakee EMS station and got to ride around town in an ambulance. They thought that she would like to ride in front with them but she scampered in back and strapped herself into a stretcher! She really enjoyed it and we are grateful the EMS team took some time out of their day to make her feel special. Last night we also scrambled and put together a little birthday party for Ellie (turns two on 3/16!) so that Ada could help us celebrate (good thing Ada can't read a calendar!). This morning Ada, Tami, and I went out and had a snowball fight and did some sledding in the 6" of snow that we got over the night. Ada got lots of giggles which always warm our hearts.
Everyone's love and support means the world to us as we continue to do everything in our power to give her the best care possible. Thank you.
Greetings from... Wisconsin! We are home. Things moved quickly one week ago. I have been reaching out to leukemia experts all over the country and I even joined a "Momcology" group where I am getting tons of useful advice and second opinions. One doctor told us to not stop the experimental drug. So even though we had stopped giving it to Ada a little over a week ago based on her bone marrow results, we started it again last Monday (she luckily only missed 3 doses). According to this doctor (and other families I've met on Momcology) it can take more than one 28-day cycle for the drug to work. So we thought we'd give it a shot. Ada's cell counts have not recovered enough to begin another cycle of the clinical trial (which involves chemo for the first 5 days) so we are just giving her the experimental drug and fortunately that can be done at home! So we got medicine refills, said our goodbyes to all the incredible people that have gotten to know us, quickly packed up all of our junk and hit the road from St. Jude (Memphis) to Wisconsin. We left late afternoon last Monday and drove for about 4 hours to St. Louis. We spent the night there and finished the 6 hour drive the next day. I was absolutely dreading taking Ada on such a long car ride. Its hard enough to keep a 4 year old busy for that long in a car, but her nausea sure wasn't going to help. Shockingly, she handled it really well! She didn't get sick on the first day, but did throw up about 5 times on day 2. She managed to stay busy with her tablet, drawing on the windows, playing with stuffies and destroying everything within arm's reach. It was so good to get back home and all be together again.
The past week has been filled with lots of playing (Ada is back in her element of being a mama to Ellie whether Ellie likes it or not) and still lots of hospital visits. We have probably spent just as much time at the hospital (back at UW) as we have at home. Ada is very transfusion-dependent (needing platelets and red blood cells) and needs to be closely monitored. Our tentative plan for now is to continue on the experimental drug and monitor her blood counts. If it seems her cancer is not progressing, she will have another bone marrow biopsy in a couple of weeks and if, by some miracle, she is cancer-free then she will move on to another transplant. However, if her cancer progresses then we have other treatment options that we are lining up (more chemo and/or other clinical trials).
This past weekend was busy. On Saturday we had the privilege of visiting the Waunakee police department and fire station. They (along with the EMS) have been so incredible. They are putting together a public safety blood drive (April 1st- sign up here!) and partnering with our family to highlight how important blood donations are. Assuming Ada is not hospitalized, she will get to ride a firetruck or ambulance to the blood drive! So we were all also invited to tour the public safety buildings and the kids had a blast! Of course Oliver and Ada asked a million questions and enjoyed touching all the buttons , climbing in and out of the police cars and firetrucks and running around like it was their own playground. Afterwards, Ada was given a very special surprise- a care package filled with personalized items for her bike, barbies (including a foldable ambulance that all 3 kids are constantly fighting over), a cheetah, a police build-a-bear, sticky balls and cool EMS gear). I am constantly amazed at how wonderful our community is. THANK YOU Wauankee PD, EMS and fire!
After the tours, Ada spent the afternoon at the hospital getting her nose tubie replaced (its very common nowadays for her to vomit her ng tube out and need it replaced). When this happens, we need to get it back in asap since this is pretty much the only way she will take her medications. Unfortunately on weekends we usually have to go to the ER to get this done and it tends to take a VERY long time. We then spent most of Sunday outside enjoying the "warm" weather and mud. Ada got to have a playdate and have a somewhat normal non-hospital day! Today we are back at the hospital getting yet another platelet transfusion. We are hoping for another uneventful (mostly stay-at-home) week!
Gofund me Link is active under "ways to help" within Caring Bridge
Direct link to site:
https://gofund.me/815d4890
-Holly Ertmer (Tami's sister)
We have started to get results back from the bone marrow biopsy. This treatment either didn't work at all or only a partial response (depending on the test). This is the fourth treatment that hasn't worked so it has been a very tough news to hear. Fortunately Ada remains happy, energetic, and doesn't have any organ damage that we are aware of. We are consulting many experts across the country. We don't know what is next but will likely head back to Wisconsin for the next round of treatments. Tami will arrive here tonight. It will be good to have her here.
Warning, this will be a long post, the medical update is in the next paragraph so feel free to just read that....now that I have that warning out of the way I am not going to worry about keeping the rest of the post short, grammatically correct, proofread, etc :).
We are on day 28 of the clinical trial tomorrow. The first 5 days were broad acting chemotherapy plus the study drug. She has remained on the study drug and tomorrow she will have a bone marrow biopsy to see if she is responding to this treatment regiment. However it is unclear when or if we will get a definitive answer from this biopsy as they perform various tests which seem to taken variable time to get results from, also her counts are still quite low so they might need to do another biopsy at a later date to get a better sample.
One of the "best" things about Ada having cancer at the age she does is that she doesn't know enough (and we haven't felt the need to tell her) to be worried about everything. We still her she is getting medicines to help her immune system get better and that we go to the hospital so often because her friends there want to see her and help her. She doesn't consider herself sick. This actually helps us immensely as Ada just wants to play and have fun which forces us be in the moment and present with her. We don't really have a typical day because appointments (eg her primary oncologist, lab draws, dressing changes, OT, PT, school, getting transfusions, etc) and the occasional nausea but I wanted to use this post to give people a view into her life and some of the areas that we find daily joy in.
We are living in essentially a hotel room so I lay as still as possible in the morning (usually reading) until Ada awakes anywhere from 7-8 AM. If she isn't nauseous I can usually get all her morning medicines done within an hour or so (we have found giving her anti-nausea meds time to work and spacing the rest out a bit increases the chances that she will keep them down. During this "down time" Ada usually watches TV, plays with her iPad or makes a complete mess of the toys we have in the room while I scarf down some food (usually I multi-task and help her with a hundred things during this time as well....e.g. I make her stuffies diapers out of paper towel). If its during the weekend she usually doesn't have any appointments so we try to get off-site for 2-4 hours, the most popular destination is the Memphis Zoo but Ada has been to Bass Prop Shop and a few parks as well. [That said this past Sunday, yesterday, I was getting ready to go to a park and noticed symptoms indicating to me that she needed a platelet transfusion which then led to 9 hours in the transfusion center due to complications (thankfully completely resolved) and also needing a blood transfusion].
During the week after Ada's morning meds we always head to the hospital by taking a shuttle (its walkable to the hospital from where we are but there is ongoing construction which kicks up fungus and bacteria that could be very dangerous to Ada so she isn't allowed to be outside on campus). The shuttle drivers are all very friendly and know and love Ada. She hops up on the bus (ignoring my pleas to get her to say good morning) and quickly goes to work buckling 1-2 of her stuffies into their own seats all while stating firmly "not ready". She refuses to let me help her but fortunately the bus drivers are patient and wait her to yell "ready". When we arrive she unbuckles them and says "bye bye" or "toodle-loo" to the bus driver as she carries them off the bus. Next, depending on her energy levels, Ada grabs a wagon and either jumps into it or sets her stuffies into it and pulls it. we might go straight to an appointment but when we aren't in appointments we head to St Jude's new Family Commons. They just opened the Family Commons on Feb 7th and Ada was one of the first patients to take advantage of many of the amenities. I found a new links if you want to read more about it (https://www.actionnews5.com/2023/01/24/st-jude-childrens-research-hospital-unveils-new-family-commons-space/ and https://www.stjude.org/media-resources/news-releases/2023-medicine-science-news/st-jude-unveils-45000-square-foot-family-commons.html). Its on the second floor so I answer Ada's questions or smile appreciatively to whoever is within her questioning range while we wait and ride the elevator.
Once we step off the elevator we have entered Ada's domain and she starts her rounds. All the teachers, staff, security guards, etc know Ada's name and are very sweet to her (and me!). First she heads to the salon to ostensibly say hi but usually gets shy right outside the door to the salon and grabs my hand (which I'm only too happy to hold) and drags me into the room. The ladies all say "hi Ada, how are you today?", Ada doesn't say much at first so I answer for her and do a little chit-chat. Ada notices this weakness and starts playing with something she shouldn't or starts interrupting by asking me, a patron or the staff a "why" question (which I love and encourage!). I believe Ada was their first customer ever!
Next, Ada runs down the hallway to the art studio to say hi to the teacher there (who is great!) and see what they have going on in that room, sometimes we stay there for quite a while coloring, crafting, cutting random pieces of paper, cleaning paint brushes, chatting the with the teacher, etc. This is one of Ada's favorite rooms and I can often leave her there for a minute or 2 to grab a (free and good!) coffee.
Then she either heads to the maker space to see what is going on there or goes to the music room (both rooms are staffed by amazing people). So far at the maker space we've made a blanket, played with magna-tiles, partook in a little pyrography, watched the 3D printer in action, dragged a ball of yarn across the floor for 30 minutes, etc). In the music room Ada does everything (often in very quick succession) from singing into the microphone, playing the piano, playing the xylophone, playing the drugs, playing the ukulele, etc. However, by far her favorite activity in this room is when there is staff in there (this room is only sporadically staffed at the music therapists spend a lot of their time visiting patients staying in the hospital) she elbows her way into the control room and changes the lighting of the room or instructs me through a microphone to sing specific songs....I don't have a great voice but happily embarrass myself to please my Ada.
Outside of the play room there is a play area with a little slide and some other fun toys. She takes toys from other parts of the area up the slide and rides them down quite frequently. There is also a little deck just outside that room that has sheep that light up, chairs that spin like a top, and movable stepping stones. She enjoys both places and sometimes has little friends to play with there. That is often the spot where she is occupied enough and can't break anything too expensive that I get to chat a bit with other parents.
At some point I drag her off the second floor for a short walk to the cafeteria while I shove some food down my throat while Ada either plays music for me on the juke-box, pushes her stuffies around the cafeteria in wheeled highchairs, or lays and rests.
By early afternoon Ada is sometimes tired and will walk into the "Rest Nook" area. She is often 20 feet in front of me as I gather up our stuff and try to catch up with her so by the time I get there she has requested a room, a pillow, and heated blanket. One of the regular staff in that section is always tickled pink by this a loves Ada. Ada will rest in there for an hour or so each day (rarely sleeping, usually iPad or reading). These rooms are private and really nice with essentially a full size bed/couch and 2 comfy chairs. We spend more time in here and more time on her iPad on days that she isn't feeling well.
My favorite thing about the Family Commons is that there is a "casual care" which have two amazing staff that will watch Ada for up to 2 hours a day. I sometimes can't utilize the full 2 hours due to appointments, etc but this allows me to run back to the hotel room (Tri Delta Place), exercise, shower, organize, clean, fill out paperwork, etc. It is incredible to have a little bit of time to myself. Ada's loves the ladies that run this space and probably pops in to say "hi" to them or show them something she made at least 5 times a day.
Another spot we love is the school that they have there. Ada has school every other day for 90 minutes with one of two other friends. Parents can't leave the floor during school but I can have a little down time to have a coffee or snack, listen to a podcast, read up on leukemia, browse the internet, talk to other parents, etc. The teachers say that she is "a doll", "doing great", "listens really well", etc. Ada definitely loves it there. After class we almost always go to the school library and read a few books and then pick up a few to check-out to read in the rest nooks or bring back to the hotel.
Depending on the day the fun gets interrupted by a variable number of appointments but we head right back up afterwards!
Around 5 or 6 we head to the cafeteria for dinner (Ada still isn't really eating anything and gets almost all her nutrition through her NG tube from me throughout the day and night), then shuttle to the hotel, take a bath, watch a bit of TV while I do her nighttime meds (pretty much the same as the morning), read a few books and off to bed by 8 or 9! I wait until she falls asleep and then finish her nighttime meds, set-up her overnight feeds, organize a bit, decompress, etc. Ada usually wakes up once or twice throughout the night for around an hour wanting to play or ask me questions. I try to get her to go back to sleep as she needs her rest but she is a creative and imaginative little girl. If you read this far you get a fun story: one morning I woke up to her shooting a syringe of cold water into my belly button and then her scrubbing it with a little brush! I'm really not sure how she comes up with these things but I eventually just let it happen since it meant I could lay in bed for a few more minutes! :)
I love Ada so much and am so thankful that she is keeping me busy so that I can (mostly) stay in the moment and enjoy this one-on-one time with her. My heart does hurt missing Tami, Oliver, and Ellie but we are all making the best of the situation and are lucky to have so many supporting all of us. We will continue to try our best to not wait for the storm to pass but to keep dancing in the rain!
Just posting 5 more pictures as promised in the other February 16 post!
Howdy! Just a really quick note that things have been taking a very long time to reach Ada when shipped to the previously mentioned address. We were told to that using the below address would be quicker. Either address should work, but please use the below for now. Thanks!
Attn: Adalyn Swenson
350 North Third Street
Memphish, TN 38105
Well, one good thing about all of this is that it is MUCH warmer here than home! However, we got blasted with some ice this week that left our car buried in a thick layer of ice and the roads completely undrivable. Fortunately it lasted only a few days and things are starting to thaw out. Despite all of the ice, Joel somehow made it out (via airplane) on Wednesday and is now home with the other two kids for about one week. On Thursday, Joel, Ellie, Oliver, and Joel's parents are going to fly down to Memphis to hang out with us at St. Jude for about 5 days. We are looking forward to the company! Ada and I are squeezing in some quality time staying at Tri Delta and going to her very LONG doctor appointments. For example, Thursday we were at the hospital from 7 am until about 5 pm for labs, a transplant consult (to see how their bone marrow transplant process compares to Madison), a social work meeting, to get her dressing changed, meet with the doctor, and to get a blood transfusion. Phew! To say this is exhausting is an understatement. At least we've been sleeping well at night. St. Jude is truly incredible though. They really ensure that families don't pay for ANYTHING. That includes travel (for us and our family), food, housing, and of course medical care.
I thought we were going to get a hospital break yesterday, but we ended up back there for a platelet transfusion. At least it was fairly quick and we were there for just a couple of hours. We did finally get to spend some time out of the hospital. If you've ever been to Memphis you probably have seen this huge glass pyramid looming in the distance on the Mississippi. I thought it was some historic site or a museum. Turns out it is a ginormous Bass Pro Shop! So Ada and I had to check it out. We went yesterday morning and easily spent 2-3 hours there. I think she was most excited about sitting on the four wheelers and wishing she could have one. But more interestingly (to me), they have tons of fish, alligators, a bowling alley, an elevator that takes you to the top where you can get a great view of Memphis, and much much more. When the employees found out that Ada is a St. Jude kid, they treated her like royalty. They gave her free fudge, we got to go on the elevator to the top, and they let her go fishing at one of the indoor ponds. She caught 6 trout and had a blast!! She really enjoyed forcing me to touch the fish. She then got a hat and blanket. Needless to say, we will be coming back here especially when Oliver and Ellie come here in a few days!
What else have we been up to while stuck in a small hotel room? Did I mention that we can't go outside because we are surrounded by construction (which could lead to a lung infection for her)? So inside...lots of running back and forth like crazy people, throwing sticky balls at the walls and ceiling, washing the sticky balls with all of the mini soaps, going back to the hospital to play in all of the fun play areas, and exploring the common areas at Tri Delta (small play area, air hockey, video games).
Medically, Ada continues to do well (as far as we can tell). There were a few rough days were she had some intense eye irritation (caused by the high dose cytarabine that she got during the first five days). She was unable to open her eyes completely and couldn't see well. Luckily it passed as quickly as it came on and she seems back to "normal" now. She also had a few bouts of nausea, but overall seems to be feeling pretty good. My goal each day is just to keep her busy and happy!
-Tami
Ada is already on Day 4 of treatment! That means just 1 more day of iv chemo (and at least 24 more days of the experimental drug). That also means that we are being discharged tomorrow after her last iv chemo. It turns out that St. Jude likes to keep kids outpatient as much as possible to maintain some 'normalcy'...well at least as much as possible given the situation. So we will first be housed at the Tri Delta house which is a 5 minute walk from the hospital. It is basically hotel-style housing. And then we will eventually move to the Ronald McDonald House which is off campus, but is a short shuttle ride away. It seems more appealing because they have their own cafeteria and a place to cook! While we would LOVE to go back home to Wisconsin once we are discharged, we have to stick close by since Ada's cell counts will drop due to the chemo and she is going to be constantly monitored for side effects, etc.
So far Ada has handled the treatment as well as can be expected. What has helped her immensely is her bike! We were shocked to find out that St. Jude did not have a tricycle so before I headed down, I frantically searched for a suitable bike. Somehow I managed to find nearly the same tricycle that she had at the UW hospital on facebook marketplace! It was new, it was cheap, and the guy gave me 2 for the price of 1!!! So I loaded the 70 lb bike up and drove her down to Memphis (thanks to my dad, the drive down was pretty easy and only took ~9 hours). Ada did a happy dance when we arrived. I like to think it was because I just got there, but it was probably more likely because she saw the bike. She immediately hopped on and rode around to show off her new bike (bedazzled with lights!).
We've continued to spend our time here biking around (and we've learned to attach a leash to the bike to slow Ada down), exploring all areas of the hospital, meeting the adorable volunteer pups, hanging out in the amazing & delicious cafeteria, admiring the artwork on the walls, and meeting all the staff (we even met physician's assistant Hailey who is a cancer survivor AND astronaut!). Our plans are to be here for at least another 4 weeks. After the 28 days of treatment Ada will have a bone marrow biopsy to see if she has any remaining cancer. If not, then we are moving onto a bone marrow transplant (very likely back in Madison). If there still is cancer... we will have to see if its worth doing more cycles of this treatment or switching to yet another treatment regimen. What has been encouraging so far is blasts have not been seen in her peripheral blood the last two days. While that doesn't necessarily mean the cancer is gone, it is going in the right direction!
~Tami (I accidentally used Joel's account)
Hello from St. Jude! Ada and I have gotten our bearings for the most part (we have a decent understanding of the new team, new rules, new procedures, etc). She is doing well right now. She still has blasts circulating in her peripheral blood and will continue to need blood and platelets transfusions but she is still full of energy, questions, and spunk! Right now she is potty training her cow stuffed animal ("cow-y") and making a bed for him out of washcloths. Her having this much energy while attached to an IV is challenging since she tries to just yank the IV pole around by the tubes...it won't be fun when one of those tubes yanks out for her or the IV pump! That said, I'm very happy to play with energetic, spunky, and confined Ada as this is much better than when she is in pain. She "passed" all her tests and is officially in the clinical trial now which starts on Tuesday. It will entail 5 days of broad acting well-established chemo (which she is gotten before and has a decent safety profile), twice daily experimental drug (which is very specific and has a really good safety profile so far) for at least 28 days, many other prophylactic medicines to keep her infection free, etc. Again, the goal is to get her back into remission for another bone marrow transplant (likely either at St Jude or in Wisconsin). Everyone and everything is great at St Jude but we miss the wonderful facilities and staff at UW Health as well! Ada and I have met with doctors, nurses, nurse practitioners, patient care assistants (PCAs), nutritionists, physical therapists, child life, a therapy dog, etc. Ada and I have taken in a lot of information, new rules, new schedules, etc + we've asked a few questions and advocated for Ada ;). (so that is my excuse for taking so long to update folks! :) ).
So far some of the fun things we've done include: play in the playroom on our floor, push a touchscreen on the wall to learn about sea animals (our floor is ocean themed, others are space and jungle themed), use the imagine room, play on the musical stairs (each stair has a light gate that when interrupted plays a musical note), pull cow-y around in the wage, pull her iPad blaring dance music to the nurses station, bark at people pretending to be a dog (Ada gets so embarrassed when I do this), etc.
Tami is driving down with her dad tomorrow! I'm looking forward to seeing them!
A few people have asked for Ada's new mailing address. So here it is:
St Jude Children's Hospital
262 Danny Thomas Place
Memphis, TN 38105
Attn: Adalyn Swenson
She is settling in and making herself known. As far as I'm aware she has spent quite a bit of time in the playroom and keeping the nurses on their toes! I'm still in Wisconsin and plan to make the drive down (with my dad) on Monday so that I can be there when Ada begins treatment on Tuesday. It's been hard being so far from Ada and Joel but it's also really hard knowing that I'll be leaving the other 2 kiddos in just a few days. For now I'm going to enjoy my time with them by playing in the fresh snow, going to a school event tomorrow and then a badger hockey game on Saturday. Thanks again for everyone's kind words and support!
Ada and I had an uneventful trip down and are all settled in! Ada already spent an hour in the playroom and bossed all the nurses around. Everyone and everything seems great so far. That's all from me tonight as the trip tried me out!
Just a quick update tonight: Ada has remained outpatient (meaning we give her all her meds, do basic care for her PICC line, etc) until today. She has been going to he hospital very frequently over the past week to monitor her hemoglobin, platelets, neutrophils, etc and getting transfusions when necessary....we've been there a lot. We have treasured the days where our whole family is under one roof. Today she went in and the blasts (baby blood cells, likely cancer cells) in her peripheral blood went up quite a bit. She was unexpectedly admitted today to start a new chemo and monitor her for tumor lysis syndrome. She thankfully remains cognitively and physically spunky. Tami is spending the night with Ada and I took Oliver and Ellie to say goodbye to Ada before her big trip to St Jude (which we have been playing up quite a bit!). We don't know how long she will be there but likely at least a month. Ada and I will be flying down on an air ambulance to Memphis tomorrow where she will start the clinical trial on Tuesday. Tami will drive down with her dad sometime before then. Either Tami or me will always be down there with Ada and depending on her health, etc both of us may be down there. This is an emotional time for our family as (1) phase I clinical trials are not a place we want to be; (2) having the family in two locations across the country also sucks. We still remain hopeful that we are getting Ada the best treatment possible and remain extremely grateful to family and friends that are supporting our whole family in various ways. Thank you everyone.
Ada came home last night after a rough afternoon at the hospital. Its amazing to have everyone under one roof again even if it will only be for a few days. We don't have specifics yet but Ada will be transferred to St Jude's in the next few days or maybe next week.
As Tami mentioned last time it was unclear if the chemo Ada was getting this round was working. We still don't have a perfect answer but there are strong indications that it is not working as well as we would like. She still has blasts (baby white blood cells which are normally cancerous) in her peripheral/circulating blood and she isn't making blood cells quicker than her body is using/destroying them which means that she is very transfusion dependent and also highly susceptible to infections (which can be very serious). Given this plus other information, the medical team at AFCH UW Children's Hospital provided a list of ~20 clinical trials that Ada would likely qualify for and could potentially benefit from. Tami and I reviewed the trials, consulted with the amazing team at UW, got some second opinions, and ultimately came to the consensus to enroll Ada in a phase I clinical trial at St Jude's in Memphis . This is a very attractive therapy since it is very targeted with (so far) very few adverse affects. Ada is still close (temporally) to her bone marrow transplant which is a harsh experience with lots of toxicity and thus a specific, less toxic approach is very attractive. We think that this gives us the best chance of getting Ada into remission so that she can have another bone marrow transplant which we are still hoping could lead to a cure.
This was a very difficult and emotional decision for us to make for many reasons including:
1. The entire staff at AFCH UW children's hospital has been amazing and made Ada's stay there something that she looks forward to (we recently asked her if we could get in a car and go anywhere where would she go, she said "the hospital"). They also tolerated and made us feel like partners in Ada's care and treatment decisions. I can imagine it being frustrating dealing with parents that have advance degrees in molecular biology/toxicology, work at companies in the clinical trial space, etc but they were always very willing to humor us. We cannot begin to imagine how to thank all the doctors, nurses, nurse assistants, PTs, OTs, child life, social workers, psychologists, pharmacists, nutritionists, etc (sorry if you are an etc and reading this!) and we will miss them dearly.
2. St. Jude's looks like an amazing place but it is very far away. This is going to put even more of a strain on our family (especially our almost 2 year old and our 7 year old) as Tami and I will likely be in Memphis a good bit (one of us will always be there). Ellie and Oliver could come down there with us but we don't know how long we will be there, don't know how intense things will be with Ada, don't know what the kids would do, etc. For the meantime we want to keep Oliver in school with as much routine as possible. So grandparents will likely be stepping in big time again to help with Oliver and Ellie. We don't know how to ever thank them either for all their help and sacrifices. We love all our kids so much and while its obviously most heartbreaking to think about what Ada has gone through (on the flip side, she has gotten to do some pretty special things as well) it has also been extremely hard on the other kids. They have handled it amazingly well but this will be a new challenge. Thanks to the entire village of people who care for and about Oliver and Ellie. We appreciate all the things people have done to make them feel special and supported. One benefit of Ada going to Memphis is that Oliver and Ellie should be able to have more playdates and do more public activities (we were all very isolated to keep Ada from getting infections).
3. Tami took a leave of absence upon Ada's diagnosis and I (Joel) took some time off initially but I've been working full-time since then due to my work generously accommodating numerous doctor's appointments, etc. I am beyond grateful to Evidation Health and all my coworkers for their support and understanding. However, given the strain splitting our family up will have, the upcoming medical decisions we will have to make, and the stage of Ada's treatment/disease I have just taken a leave of absence and am not sure when life will allow me to return. I'm hopeful I can start working again in a month as I love the company's mission, the people I work with, and working is nice therapy for me as well.
Things to look forward to: Ada is not well enough to travel commercially so Ada + 1 parent is likely going to be flown down there on a small aircraft which is pretty exciting. St. Jude's looks amazing with all sorts of cool things for kids to do (ok, I'll play with the things too). This is as promising a new drug as they have seen for AML in awhile, so there is hope!
Ultimately all we can do is keep trying to live in the moment, make the best of each day, remain pragmatically optimistic, and continue to rely on the support and kind words of our friends, family, and strangers.
Well, 2023 hasn't been great to us so far. Ada spiked a fever Friday morning, which meant we had to immediately go to the hospital. While a fever isn't necessarily an emergency for the typical kid, it is when they don't have neutrophils to fight the infection. Due to the chemo she is on, Ada's neutrophil count has been around zero. So we went to the ER (which was shockingly empty and a pleasant experience!) and then she was admitted. This is pretty standard for anyone with her condition- they just want to keep an eye on the fever and treat her with IV antibiotics around the clock until the fever goes away. As usual, she is enjoying her time here. She seemed to perk up instantly when we arrived. She promptly found her tricycle and made her rounds around the unit and made sure ALL the staff knew she was back. Ada's fever has been up and down since we've been here, but overall she seems to be feeling better. Her neutrophils even started to come up today so I am hopeful that her body will start to fight off whatever infection she has going on.
As far as everything else, its complicated and we have many more questions than we do answers right now. I am really hoping that this week will shed some light on what we will face in the near future. Ada had another bone marrow biopsy last week because blasts started to go up in her blood again (blasts are baby cells that are likely cancerous...but they could be normal blasts). She initially responded pretty well to the chemo she is currently on, but now we are not so sure. We should know more about what is going on in her bone marrow sometime this week and whether or not the chemo did anything. She has just 4 more days of the chemo pills and then we are not sure what the next step is. If the cancer went down, then we likely will repeat the month-long treatment that she just had to get it down further. If the chemo didn't work, then we have many more options. Unfortunately most of those options are phase 1 clinical trials (with experimental drugs). There is one clinical trial that seems especially promising so we are trying to get her into that. If we can, we will be at St. Jude (in Memphis) or Cincinnati in the near future (and we don't know for how long). Again, our goal right now is to get her back into remission and THEN she will be going through another bone marrow transplant with either me or Joel as the donor. It is way too daunting to think about all of these steps and possibilities so we continue to take it one day at a time. And most days lately we need to take it one minute at a time.
Many have asked how they can help. Just knowing that you are thinking of us and following along helps. But if you feel you need to do more, we opened up the meal train (under the "ways to help" tab on the top of this page) again to help while we have 2 kiddos at home and 1 stuck in the hospital. Feel free to sign up! We basically eat anything that isn't moving (too much). Thank you!!!
Happy New Year to everyone! We are very thankful that we had our whole family together over the holidays. Ada is still taking chemo (along with a bunch of other medicines) at home. She has had pretty bad nausea on and off throughout the week and we had to go to the hospital almost every day this week (she dressed up on her own volition for a few of them which the medical professionals loved). Despite that we would much rather have her getting treatment out-patient than in-patient because we can pounce on the moments that she is feeling well and enjoy our time together. We've spent lots of time enjoying our yard, the neighborhood park, bike rides, building forts inside, fishing Ellie's pants out of the toilet (after Ellie proudly took them off and put them there!), playing with grandparents (we remain super grateful for how much support and love they have provided), and even iceskating right next to Lake Mendota! Ada's zest for life and ability to find joy and humor despite the frequent pain and nausea continue to astound us.
We have some difficult decisions ahead of us for her next treatments options but there are a few options that give us hope for the start of a cure in 2023! Happy New Year all, we couldn't have gotten through this past one without all of you!
Happy Holidays everyone! Yesterday we got to bring Ada home where she will take chemo in pill form daily for the next 3 weeks. We'll also be going in the hospital twice a week for checkups and occasionally some more chemo. We ended up having to stay in the hospital one more day than planned because her tummy's still been hurting her quite a bit but it's now to the point where we can manage it at home. We are very grateful to have everyone back under one roof and continue to be amazed by the support we've gotten from friends near and far. Well, I'm keeping this one short and apologies if there are typos, I just wanted to give everyone a quick update and now off to enjoying craziness with three kids under one roof.
Here we are again. Ada was admitted on Friday for a lumbar puncture (to check for cancer cells in the spinal fluid) and another bone marrow biopsy to do next gen sequencing (to better understand if there are any genetic targets for drugs). Then in the evening she began chemo. Luckily, this round of chemo should be less intense than what she got previously. It consists of 7 days of once-a-day infusions (in the hospital) and 4 weeks of taking a chemo pill. So that means one week in the hospital (hopefully home by this Thursday) and then 3 weeks at home. This regimen is lighter (if there is such a thing for chemo) and has been successful especially for people that can't tolerate intense treatments. Ada is still very much recovering from the bone marrow transplant she had in September so she can't be on any strong meds with a high risk of toxic side effects. One of our first thoughts was how the heck can we get a 4 year old to swallow a pill!? Well, so far Ada has exceeded our expectations. Turns out if you roll medicine into a spoonful of ice cream, it can be easily and unnoticeably swallowed!
We are now on Day 4 of treatments and it's going as well as we could hope for. We are beyond devastated that we are back here and especially so soon after transplant. All we can hope for now is that we get the cancer into remission (either after this round of treatment or subsequent rounds). We just don't know if these meds will do it or if we will have to look into more targeted immunotherapies or clinical trials. We are taking it one day at a time. As always, Ada acts as if nothing is wrong and is thrilled to be back at the hospital. She is just in her element here. She loves all the nurses and staff, the unlimited toys, the attention and not having to share with her brother and sister! She instantly found her bike and has hit up all parts of the hospital (with me running after her with her iv pole). It's really only a matter of time she collides with someone on that thing! I'm happy to see the energy though.
Unfortunately we have bad news. Ada's cancer has returned and she has officially relapsed. We have been quite worried for the past few weeks for a constellation of reasons so its not a surprise. Nevertheless it has been a hard day with many challenges in our future. We will continue trying to live in the moment and make the most of each day. We are still waiting for some test results to help direct Ada's treatment plan but the most likely is that she will be admitted to the hospital either tomorrow or Friday for at least a 7 day treatment of chemo. If that goes well we can continue her treatments at home (out-patient). Assuming that we can get the cancer into remission again she will likely need another bone marrow transplant (this is at least months in the future).
We remain grateful for everyone's support and will continue to rely on your words of encouragement. I also opened our meal train back up for a few weeks as that previously relieved some stress and allowed us to focus more on the kids. Love to all and hug your loved ones!
Life isn't about waiting for the storm to pass but about learning how to dance in the rain. That is a saying that we've tried to live by for years (we have a sign up saying it in our basement!), but has been top of mind since Ada's diagnosis. Throughout it all our mantra has been to just make the best of the day that we have in front of us. Some days that was easy spending time with Oliver and Ellie, or biking through the hospital with Ada. Other days it was more challenging when Ada cried in pain.
The past few weeks have been a mix of joy and anxiety as Ada's cell counts continued to decrease. We started to notice symptoms that were present when Ada was first diagnosed (fatigue, bruises, etc) which made us quite anxious. The counts can decrease for a number of reasons ranging from she had a minor cold, some of her medicines are suppressing them, the engraftment is failing, the cancer is coming back, etc. Each week they went down we worried more that the engraftment didn't work or that the cancer was coming back. We tried to live in and enjoy the moments we had (and were mostly successful) but it was hard to do as we anxiously awaited for the next hospital visit. This past Wednesday Ada went in for her latest tests and most of her cell counts took a positive turn and are now heading up! This is great news as it supports the hypothesis that a mild cold was the culprit all along. She still needs weekly tests to make sure that things are still headed in the right direction but it was very welcome news. Given her test results we actually got permission to take her to spend a few nights at her grandparents house (my parents). My brother and his family were visiting as well so it was so much fun to be able to spend time with so much family. The cousins played games together, sled together, and generally had a great time.
Random things: her hair is starting to come in! Right now it looks straight and black, so that will be interesting! We decorated for Christmas and Ada (and Oliver) loves it! :) :)
Despite the challenging year that we've had we always have a lot to be thankful for. Top of that list is the hope that Oliver's donation and Ada's fighting spirit have given us. We also remain incredibly grateful for the support from you all and all the medical professionals who have cared for Ada and Oliver (and Tami and I)! I hope that you all had a great Thanksgiving and were able to find plenty of things to be thankful for!
Once again it has been way too long since my last update! Apparently time flies when you are busy with 3 crazy kids. Overall, things are great. Ada appears to be healthy, continues to have endless energy, and is thrilled to finally have some snow to play with. Every single day she asks our Google Home system if it is going to snow today. FINALLY it said "yes". She has been outside at least once a day to have snowball battles with her siblings (and us), making snowmen, trying to sled down a mostly-grass hill, and doing snow angels. She even convinced me to put up the Christmas tree today since it really is starting to feel like Christmas. Why not!
In medical news, her bone marrow biopsy went pretty well. The pathology report was fairly clean (which means they didn't see anything resembling cancer under the microscope). However, based on the cytogenetics tests they ran, there were some mutations present in a few cells that were also present when Ada was initially diagnosed in May. This isn't necessarily the cancer, but we do know that it is not "normal" and it just needs to be monitored closely. On the bright side, most of the cells they did see were Oliver's. So we can only hope that the transplant continues to work and that his cells destroy any remaining leukemia cells. Also, the past few weeks have been a bit stressful as Ada's cell counts are decreasing (white blood cells, red blood cells, platelets, etc). When this all started, she had some kind of cold so the doctors think it is very likely just related to a virus (apparently viruses suppress cells for a while especially in immunocompromised people). So again we just have to wait and see. If her counts continue to decrease for another week or two we may end up getting another bone marrow biopsy done to see what is going on there. They also took another blood sample to look at engraftment success and we hope to see those results in about a week. We continue to take one day at a time, take lots of deep breaths, and are just enjoying all being together. We have certainly learned that things can change rapidly so we need to enjoy every minute together.
Finally, in case you didn't see it, I designed a Christmas Ada shirt to go along with this year's theme of "ho ho hope"! Any profits we get from these shirts will be used to buy gifts for kids at the UW Children's Hospital: https://www.bonfire.com/store/adas-shirt-shop/
Wow. Somehow nearly two weeks have gone by since my last update! I can't believe we are already on Day +42 (from the transplant). Ada continues to do pretty well. Her appetite is very slowly returning. It seems to be stimulated by some competition- today she ate really well only because her little sister was trying to steal it! She continues to experience some nausea and vomiting, but apparently that is typical as her GI continues to get back to normal after all the chemo. Ada's energy has not been an issue and fortunately it never really has! The only issue we had recently was when Ada's ng tube come out (through her mouth) when she got sick the other night. Of course we still rely on the ng for her medicines, giving her fluids and food so we needed to get it replaced within a day or so. For some reason we had to go to the ER to get this done. So Joel took her and it took about 6 hours! It's fairly easy for her to get a new ng tube so at this point my only concern is that hopefully she didn't catch some nasty germs while at the ER!
Yesterday, Ada's little sister, Ellie stopped going to daycare and began staying home with Ada and me. It was a very tough decision to make, but we figured it was best to keep daycare germs away from Ada and since I'll be home caring for Ada for the next 6+ months it made sense to have both girls home. So far they are having a blast together. They have a very interesting relationship. Ada is VERY motherly and wants to do everything for/ with Ellie. She wants to carry her, change her diaper, play with her, help her eat, dress her, etc. Ellie isn't sure how she feels about that. She doesn't like being smothered so there is a lot of chasing involved. These next few months will be another big test of my patience, but I am looking forward to taking a step away from my career to focus on these kiddos for a while.
Last week Joel and I got to participate in the American Family Children's Hospital Radiothon. It is a way for the hospital to raise money for various resources for patients and their families. I had heard of it before, but never listened. I was hesitant to do it at first, but I am SO glad we signed up for it. We got to go into the radio studio and talk about Ada's story for two radio stations. At the end, we were interviewed by a local news station (video attached). It was an incredible way to talk about Ada and Oliver and to meet other families that are or have been in similar situations. It was also great to be involved in raising money for such an important cause (and one that helped us tremendously over the past few months!).
Ada got to see and feel snow last week. She was thrilled... I was not. She also got to go trunk or treating, ride in Papa's new convertible, carve a pumpkin, go hiking and we finally made it on our first trip to Mayme and Papa's (Grandma and Grandpa's) since April! It was just a day trip, but we packed it with loads of fun. We visited Great Mayme and Papa, played outside (it was 70 degrees!) and then we got to go to cousin Keira's 4th birthday party (outside and with just family of course). It was so nice to experience some normalcy for once and to finally see some family we haven't seen in months.
Ada has a bone marrow biopsy tomorrow just to check in on things- most importantly to look for the presence of any genetic mutations that were in her cancer cells back in May/ June. Her last few biopsies showed that she was cancer-free, so I will be on pins and needles over the next few days awaiting results and hoping that she is still healthy.
We are already 1 month post-transplant! Everything is going as well as can be expected. We are adjusting to being a full family again and are loving it! We have certainly learned to appreciate how nice it is just to all be home together. Ada has been very busy playing with Oliver and Ellie, playing with her toys, biking, etc. Her cell counts continue to go up and she feels good overall. We also found out that one of her cell lines is about 100% Oliver's cells!! That means the transplant worked (so far)! We will continue to monitor this over the next several months. She is also on lots of medicines to prevent bacterial, viral and fungal infections and to prevent graft vs host disease.
Our past week has been filled with celebrations. As we left the hospital, several staff and patients lined the hallway and cheered, sang, made noise and blew bubbles. Ada was pretty terrified (she hasn't seen that many people in a long time!). She then had the opportunity to ring the bell to signal the end of treatment. It took a lot of encouragement, but she rang it with our help! It was a beautiful send-off! Ada's (and Ellie's) daycare celebrated Ada this week by all wearing Ada shirts and they even all went outside to greet her. Ada was terrified again, but she did enjoy seeing her old teachers and friends. I am so touched by how wonderful this school has been!
I will of course continue to provide updates as much as I can. Hopefully the coming weeks, months and years are uneventful regarding Ada's health. We could all use it. Thanks again for everyone's support through all of this!
Ada has officially engrafted (although we still don't know if it's hers or Oliver's cells)!! This basically means that her bone marrow is working and producing red blood cells (very slowly), white blood cells and platelets. Her numbers have been increasing for almost a week now and her neutrophils have remained over 500 for 3 days. Her recent transition from miserable to energetic Ada has been remarkable. Just a couple of days ago she was constantly complaining of mouth pain and couldn't keep much down. Her pain just didn't seem under control. Today she jumped out of bed, changed her diaper and ran out into the hall to meet the doctors! She said her mouth is all better and has been non-stop playing since 11 am this morning (although she finally crashed for a nap at 4 pm). Over the next week or so we still need to get her off of her IV meds, get her to tolerate tube feeds (or eat by mouth) and make sure she has no more fevers. There is certainly a lot that could still happen that would hinder our ability to go home, but things seem good so far. Hopefully she will be home in about 1 week. We are also anxiously awaiting test results to see what percentage of Ada's new cells are hers vs Oliver's (ie. how much Adaver she is... get it?). We probably won't know for another week. Either way, it's such a relief to have a little bit of our sassy and energetic girl back!
"Fight like a kid" is a saying we see/hear around the hospital (and a non-profit started by a teenager), Ada epitomizes this saying. The past week or so has been incredibly hard on Ada and heartbreaking for us to see. As Tami mentioned last time she has severe mucositis and there are no approved medications for her (based on her age, type of transplant, etc). Right now the pain is under better control with the continuous morphine and we can push a button to give her some extra (a "bolus") when she needs it. Its a tough balance of morphine to keep the pain under control, keeping it a safe dose, and drowsiness. Right now she spends most of her time sleeping and the vomiting has decreased as well. A handful of times throughout the day (and more so overnight) the pain will break through but a bolus of morphine plus getting creative to figure out how to distract her mind gets things back to a manageable level.
I share all of this not to depress people but to highlight how much Ada is fighting like a kid. Right now the only time she is unhooked from her IV (she calls it her "tubey") is when she is taking a bath. Last night she was unhooked, taking a bath and in a lot of pain. Since she was disconnected from her "tubey" we couldn't give her morphine so the nurse and I were trying to quickly get her out of the bath and hooked up again. She refused, gritted through the pain and insisted on going out in the BMT hallway (a maybe 20' hallway just outside her room that she can play in if no one else is there). She gathered Santa (a 3' tall gift from Tami's aunt), threw some stuffies in a backpack (she says "pack-pack"), and headed out to the hallway. She then instructed the nurse and me to sit on the floor in a circle with her and Santa, she gave us each a stuffy and we each took turns doing "show and share". After that she biked around on her bike, I kicked some balls that she chased on her bike, and got up to other fun. Throughout all of this Ada has shown us that we don't need to wait for the storm to pass, we just have to learn to dance in the rain!
Over the next few days she won't always be able to "dance in the rain", but if there is any extra ounces of strength in her little body she will want to play. We will keep taking each day one at a time and do all we can to make her comfortable and make the best of each day. Hopefully her numbers keep increasing and we can get her home in a few weeks. Until then, keep fighting like a kid Ada, you are so loved by so many! Thanks again for everyone's support!
Things have been going as expected since my last update- tough. Again, we were told that these would be the hardest days and they have been. The mucositis appears to be very painful and Ada has been fighting a fever on and off for the past few days. She has been on continuous morphine (controlled by a button we can press if she needs more), antibiotics, and IV nutrition (since she can't keep much down when fed through her ng tube). Luckily the morphine helps especially when we give her an extra dose and once we started the IV nutrition yesterday she really began to perk up! Friday and Saturday were especially difficult because Ada just didn't want to get out of bed or do much besides sleep and watch tv (again, all very normal). Yesterday was a complete shift! She sat up in bed and played with stickers for a couple of hours, got out of bed to go potty and look at the helicopter, and then after her bath she even went out in the hallway for some trike bowling!!! To top off the day, she had milk and a bowl of oatmeal just before bed (at almost 10 pm)! She woke up in pain a few times throughout the night, but I was very happy that she kept her food down and was very talkative (even during the night...not ideal, but I'll take it!). The goal is for her to get out of bed at least 3 times a day. A few days ago, that goal was hard to hit. Today we are already at 2. Also, her cell counts are starting to increase! We don't know if that's a true sign of engraftment yet since that is when her neutrophils are at 500 for 3 days. She is at 90 (it was zero for the past several days). We just have to take it day by day and hope that this upward trend continues. She will also need to be weaned off of all of her iv meds (see pics of her tube jungle) and not have a fever before we can go home. It make take another week or two.
We are over one week post transplant! We made it through most of the first week with minimal chemo and transplant side effects. She has really hung on to her neutrophils which I think has helped keep her energy up (we were told that her numbers would drop last week and they are definitely going down, but not as fast as we thought they would... not a bad thing!). However, this week has been much more challenging. It started with Joel having a stomach bug on Sunday which immediately got him kicked out of the hospital and he couldn't go back until yesterday. And then a couple of days ago, Ada's nausea really kicked in and her mucositis (sores that can go all the way from the mouth through the digestive tract) began. She is clearly in pain and there is a possibility that some of the vomiting may be due to the sores so we started her on morphine. It seemed to help a bit. After her first dose, she instantly started playing more and becoming more talkative. Its hard to give such a little person so much medicine, but I've realized that its more important to make her as comfortable as possible to get her through this! Hopefully just 2 more weeks or so of this. Once Oliver's cells engraft in Ada's bone marrow, her cell counts should start to increase and then she should start to feel quite a bit better. During the last few days I've noticed a slight decrease in energy, but not much! I full expected Ada to be in bed watching tv all day, but she still is out and about playing. Mostly because she is almost always hooked up to her IV, Ada has transitioned to low-key activities like play doh, drawing, arts & crafts, and ipad games. As long as she's happy, I am not going to complain about not having to chase her through the hospital!
As for Oliver, he said he "finally feels like himself again"! He has a lingering cough, but he is no longer sore. I don't remember if I wrote about this in previous posts, but we won Badger football tickets through a hospital raffle. Technically Ada won, but they let Oliver + 1 parent go instead. Joel and I flipped a coin for who got to accompany him and to Joel's disappointment, I won!! The game was last Saturday and it was an amazing experience!!! We headed downtown about 2 hrs before the game and found a big tailgate near Union South. I had made Oliver a sign that said "I just donated bone marrow to my sister" that I figured he'd like to hold up at the game. However, he insisted on hold it up the entire time. And I mean, while walking around Madison, at the tailgate, during, and after the game. I couldn't tell him no! So of course he got a million high fives and all the attention he could ask for. At the Badger Bash tailgate, the NBC sports guy (Jocko) invited Oliver on stage with Bucky. After that, everyone knew his name and people started to give him ice cream money! And then there was the game... our seats were in Bucky's Patio which is a fenced-off area directly next to the end zone. I couldn't believe it when they brought us there! There were only 3 other children's hospital patients (+ one parent each) and a few hospital employees. We got our own patio table about 5 feet from the field and then we got water, snacks, pom poms, noise makers and concession stand money. At half time we got to meet some track and field athletes. Oliver LOVED talking their ears off and even challenged them to a running race. To top it off, he got to meet Bucky, the cheerleaders, the UW chancellor and we were featured on the big screen. The Big 10 Network even filmed Oliver for a few seconds, but I don't think it actually made it to tv. It was a well-deserved experience for this little boy that so fearlessly underwent surgery last week for his sister!
We are already 2 days post-transplant! Tuesday was pretty rough for both Ada and Oliver. It took Oliver a bit to snap out of the anesthesia and it made him pretty nauseous. Ada received the stem cells around 3 pm. It was a pretty tense process with the transplant physician, residents and nurses standing by to keep an eye out for any allergic-type reactions. It started off really smooth. The transfusion only took about 1 hour. Near the end she started to get high blood pressure so she got 2 meds for that which then increased her heart rate. Fortunately her blood pressure normalized but then she got a low-grade fever. During all this, she was vomiting and pretty inconsolable. She ended up taking a good nap and once she woke up she was a new girl! By bed time Ada was pretty wiped out (as were we)! We decided to not give her feed through her ng tube through the night and I think it helped her recover a bit from all the excitement. Her fever went away pretty quickly and she slept pretty well at night. Since Tuesday, Ada has been doing great! She has had LOTS of energy, hasn't been nauseous and has been very playful. I'm sure there will be many more tough days until Oliver's cells engraft (about 2-3 weeks from now) so I'll take these high-energy days!
A quick update because I know many of you are wondering... The bone marrow harvest from Oliver went really well! There were no complications and they got lots of stem cells. He is now hanging out in his hospital room just a few doors down from Ada. He will be kept overnight just to keep an eye on his pain. He's still a bit out of it from the anesthesia and he said his butt hurts, but otherwise he's doing great! I'm sure he will be running down the hallway and digging through the freezer for ice cream in no time! Ada will receive the cells within the next hour or so and we expect that to be fairly anti-climatic. We appreciate everyone's thoughts and prayers!
Today is day -1, one day until the bone marrow transplant. Normally we write about Ada on here but we actually have 2 super heroes in our house! This post will be about Oliver!
Oliver has never loved needles or doctor's visits so we were nervous when taking him and Ellie for their initial blood draws to see if one of them would match Ada's HLA type. [A related, young donor is optimal to match with but there is roughly a 25% chance of a sibling being a donor so with two siblings Ada had a roughly 43% chance of one of them being a perfect match] Sure enough, he didn't love getting his blood drawn by he did it and was an "initial" match. He could still get disqualified with higher resolution testing, an infectious disease screen, etc so we were debating how and when to tell him as being the donor would mean many more blood draws, a hospital stay, and surgery.
One day at dinner we mentioned that the results from initial testing were back and do I told him it was looking good and he was a perfect match so far. He was so excited and happy, grinning from ear to ear. I still tear up thinking about it. He has worked hard to overcome his needle fears but has never once faltered in his desire to donate to her. He has also been very patient and understanding of us asking him to wear masks indoors, limiting indoor playdates, washing his hands extra, lots of doctors visits, etc.
He is very proud of his sister and that he is able to help! Over the summer he was at daycare and everyone had to go around and say who their hero was, he said Ada! On the first day of school he told everyone about Ada and that he was going to donate stem cells to her and asked what questions they had! I can't describe adequately with words all my emotions by will just say that we love him so much and are so proud that he wants to help his little sister even if it causes him some pain!
Yesterday was, what we hope to be, the start to our last long hospital admission. We arrived in the afternoon to a very fun decorated room! Ada had requested that her room be decorated with Toy Story, Disney, Paw Patrol, and christmas... and that is what she got! She has a christmas pillow, mickey pillow, Buzz Lightyear stuffie, Minnie mouse light, characters lining the walls, and a huge stack of toys. They sure know how to take care of us here! And this is why she loves this place! During this admission she has to stay either in her room or in the small hallway just outside her room (to keep her exposure to germs at a minimum). I was dreading it since she loves to roam the hospital. However, after the first day I am feeling less concerned. She was very busy with 4k lessons (she started 4k with the hospital teacher, Val), Childlife, occupational therapy, and physical therapy. She also began her chemo treatment at 6 am this morning. I think its safe to say that she will be kept occupied! She has just 4 days of chemo and then 2 days of rest. Next week Tuesday will be the transplant. It will be very anti-climatic for her as they will just put Oliver's bone marrow stem cells into Ada's central line just like any normal iv infusion. The tough part will be when we start to see the side effects of the chemo, which is expected to start next week and last roughly 2 weeks. This will likely include nausea, fatigue, diarrhea, and mouth sores. She may sail through this with no complaints, but I am going into this with low expectations so that I am mentally ready (as much as I can be). Then hopefully ~10-14 days after the transplant, Oliver's cells will start to engraft (take up residence and "grow") in Ada's bone marrow and her immune system and red blood cells will start to increase. This is when the symptoms will get better and she will start to feel better. Once she doesn't need frequent blood and platelet transfusions and is overall doing better, we get to start thinking about going home (4-6 weeks overall).
Oliver's procedure is a bit more involved, but obviously shorter. He will go into the surgery room bright and early on Tuesday and go under general anesthesia. The marrow is harvested from the backside of his hips (both sides) over the course of roughly 30 minutes. That's it! The cells are processed and then given to Ada within a couple of hours. He will stay at the hospital the rest of the day and overnight just to be monitored for pain and blood levels. It sounds like it shouldn't need anything more than Tylenol and ice ream.
It will be a long month or so, but we are taking it one day at a time. Again, Ada's endless energy and happiness keeps us all smiling. Thanks again for everyone's support through all of this!!
See August 22nd post for more details but I wanted to quickly post a link to fun videos of Ada dancing to fireworks! https://photos.app.goo.gl/xRrLrVEAHo8jeeSp6
Another uneventful update! We have about one week left before Ada has to go back to the hospital- she goes back Tuesday Sept. 6. She is very much looking forward to it. We are not! However, again, we can't wait to get this over with and have her back home for good. This hospital stay will be pretty intense and long (about 4-6 weeks). She continues to keep us very busy at home and you can tell that she just feels much better (compared to the spring/ early summer). We got the results back from her recent bone marrow biopsy and she remains CANCER FREE!!! We just want to keep her that way (with the bone marrow transplant). Oliver had his transplant work-up done last week which involved a very long psych evaluation (which is apparently legally required of anyone donating for a transplant), a physical evaluation, a tour of where he will spend the night (hopefully next to Ada) and the operating floor, and a blood draw. He LOVED his day-long appointments (except for the needle part)! It was very sweet. He enjoyed spending the whole day with us, seeing where Ada has spent her summer, and getting to ask the nurses and doctors tons of questions! Since Ellie has been missing out on all of the medical fun, she decided to get ear tubes put in this Wednesday morning. Compared to everything else, I am not worried about this at all. I am looking forward to her hopefully having fewer ear infections and at the very least, not needing as many antibiotics! After Ellie's surgery, Ada will have her pre-transplant work-up on Wednesday afternoon which should be pretty uneventful. Oliver then starts school on Thursday and will attend Thursday and Friday. We are going to keep him home all next week to make sure he stays healthy enough to do the transplant on Sept. 13. I'm sure he'll love the extra days at home! Other than that, we are just going to make the best of our last week until we're back at the hospital.
Ada has been home from the hospital for almost 2 weeks and we have jammed in a lot! We are thrilled that she will be here for another 2+ weeks yet (tentative admission date for the bone marrow transplant is Sept. 8). Our days have been filled with doctors appointments, bike rides, water play, playground fun, playing with massive bubbles, swinging (on our cool new swing in the basement!) and playdates. Ada and Oliver even set up a tomato and bakery stand that Oliver insists on operating on a daily basis. He has managed to sell ALL of our veggies from our garden (cucumbers and cherry tomatoes), cookies and puppy chow. He has generously decided to donate all the money to childhood cancer research! Another highlight from this past week was Waunaboom. Waunakee had canceled their 4th of July fireworks since the weather was pretty bad and it was rescheduled for Aug. 20. It worked out perfect for us because we got to take Oliver and Ada. This was Ada's first big fireworks show. We kind of assumed that she would be terrified and that we would end up leaving early, but we couldn't be more wrong. The instant the fireworks started she jumped off the blanket and started dancing around with her glow sticks. She didn't sit down the entire show. She was just dancing and giggling nonstop! Eventually Oliver joined her. We couldn't have asked for a more perfect 4th of July re-do!
In other news, Ada had her bone marrow biopsy last week and it went well. It was a long visit, but she got her biopsy, lumbar puncture (sample of the spinal fluid), ng feeding tube changed, EKG, and central line dressing changed. Lots of fun stuff! During the biopsy, she gets sedated and during the first few times she got pretty sick while she woke from it. We've been trying to figure out ways to avoid it by treating her with different kinds of anti-nausea meds and I think we've finally figured it out by giving her benadryl as soon as we stop the sedation meds. This also has the added benefit of eliciting a nice long nap. She slept for ~3 hrs post-sedation and the only way to wake her up was to wave a bag of chips in front of her. She instantly grabbed the bag and ate it all! I think we finally also found something she likes to eat!
Ada got to come home today! We are very excited to have her here and she will be home until early September. It seems much easier for her to adjust so far this time. Thanks as always for everyone's continued support!
Several people have asked about the "Ada shirts" that I made. Since my cricut and I couldn't keep up with demand, I created an online store where people can order the shirts in different colors and styles:
https://www.bonfire.com/adas-shirt-store/
I realize the shirts are a little pricey, but all of the profits that go to us will be donated to the American Family Children's Hospital cancer research (uwhealth.org/fightkidscancer). The care here has been incredible, but I continue to be shocked by the "old school" broad chemo drugs that are still being used to treat cancer. There are many very promising new targeted therapies on the horizon and I want to do as much as I can to support this research and development. Luckily childhood cancer is rare, but that also means that funding for research for such a rare disease is hard to come by especially compared to more common cancers and diseases.
Others have also asked how they can continue to support us. We have really appreciated how everyone has already helped us. Especially with food! So as a reminder, we have a meal train that my sister set up and it can be found under the "Ways to Help" tab on top. I anticipate that September and October will be a bit rough for us as we go through the bone marrow transplant process. I hope to return to some normalcy in November and maybe I can learn (and get the motivation) to cook again!
Finally, a quick update. Ada continues to do really well! We are on about Day 10 of the nadir (low cell counts). I am hoping that any day now we will start to see neutrophils go up and then we can go home once they're above 200 or so. Once they start to increase that only takes another day or two to get to that point. She has had 2 platelet and 1 blood transfusion so far. Her energy continues! She is biking, running, playing school, playing with her babies and stuffies, and throwing sticky balls at the ceiling (best Target purchase ever!). Somehow we haven't really run out of stuff to do here. But I am very much looking forward to us all being together at home again soon!
The weekends can be a challenge to keep our energetic, curious daughter occupied as she doesn't have OT, PT, or child life (group of people that play with her and help with her social and emotional development) but we (largely Ada's goofy ideas that we indulge) manage to come up with a few fun things! My brother and his family sent Ada a giant sea shell and Tami's aunt sent a small Santa (see the pictures). We also built a castle, turned the lights off and played with shadows on the wall! We are anxious for her cell counts to go up before we all go too stir crazy! We are hoping she'll get to go home in a week or two, and then she will likely be home until after Labor Day! That is around when the bone marrow transplant likely will take place.
Thanks again for everyone's continued support!
Ada finished her treatments during this round with flying colors! She got her last chemo on Saturday morning and up until then she was full of energy and acting pretty "normal". Nights have been a bit rough only because her energy is endless. However, she has been a bit nauseous and little slower the last few days as her cell counts have started to go down (as expected). She has reached the nadir stage where her neutrophils will be zero for about a week or 2. Again, we will just wait around and keep an eye on any infections and then anxiously await her counts to go back up. At that point we should be able to go home one more time before the much anticipated bone marrow transplant (BMT). If everything goes as expected during August, we're looking at the first week of September for the BMT. As a side note, Ellie just got a double ear infection (again) and that means she should get tubes. She goes to an ENT doctor at the end of August which means she may get tubes sometime in September. Maybe all kids will be hospitalized at the same time! Never a dull moment with our family. The BMT process is about 4-6 weeks so that will bring us to October. We really can't wait for all of this to be over and for Ada to get to the point. However, I'm getting pretty nervous because obviously a BMT is a pretty big process and the drugs that are used during the first week to "condition" the bone marrow are pretty old, nonspecific and therefore toxic. Sometimes I hate being a toxicologist. I've really had to hold back from reading too much into every drug that they give her. It turns me into a nervous wreck! We just have to keep our faith in Ada and her amazing resilience. It is a tremendous relief that Oliver is considered a perfect bone marrow match. That doesn't rule out any complications that could arise after the transplant, but it certainly helps.
Ada has been busy passing the time here by playing school, putting on concerts for all of her friends (ie. bed full of stuffies), throwing balls at nurses, biking all over the UW hospital campus, shopping at the bookstore (I think we've spent more here than our hospital copay), and making lots and lots of slime! As always, thanks to everyone for all the encouragement and support! We certainly couldn't do it without you.
We got the "main results" mentioned in the previous post. These results (minimum/measurable residual disease; MRD) use flow cytometry (MRD can be other things) to count the number of cancerous cells found in her bone marrow. They couldn't find any, 0 cancer cells detected, 0% MRD! This is great news and this along with Oliver being a perfect match for bone marrow donation gives us a reasonable path to a potential cure. MRD is measured after every round and was higher after the first round than they would have liked so there was a concern that a fraction of her cancer was chemo-resistant. That doesn't seem to be the case. They are still doing another follow-up test (FISH for the biologists following along; interesting aside that during my PhD I've personally performed and analyzed many of the tests they've done) but it's unlikely to change the results.
This has been a very hard and emotional week for us. It was hard to send Ada back to the hospital for more chemo when she was having so much fun with friends and family at home as well as acting "healthy". The saving grace here is that the staff is so amazing that Ada was excited to go back! As Tami mentioned last post, this round of chemo is shorter but more intense and she is confined quite a bit more. Additionally, we had been waiting on pins and needles for her MRD so we were thrilled when we got the results we did.
We continue to be amazed and grateful for all the support we've gotten from friends, coworkers, and family (especially grandparents!). The supportive messages (they mean a lot), random gifts, folks (including daycare) giving Oliver and Ellie extra attention, neighbors cutting our grass, support and understanding from my employer (Evidation Health has been amazing!), the continued delivery of food through meal train (we are astounded that this has continued, it's been sooo helpful), etc are so appreciated. Thank you all near and far!
Today's bone marrow biopsy and lumbar puncture went well! It is always a hard day for us as its heartbreaking to see our little Ada sedated and the results from the biopsy tell us if her cancer is chemo-responsive. It seems they got a good bone marrow sample this time so we should have a good idea how her cancer responded to the chemo treatments (hopefully within a couple of days). Last time (over a month ago), the sample was too dilute to run some of the tests on it so it was pretty disappointing to go through all of that and not get so important info out of it. We will be extremely anxious over the next few days waiting for the results...
But in the meantime, Ada is having a blast at home. She has really enjoyed hanging out with friends and family, playing with the hose, boating, going to the splash park, playing at playgrounds, and resuming a somewhat normal life (at least until next week when we have to go back to the hospital and start round #3).
Just wanted to write a quick update that Ada is home! Her neutrophils rapidly increased this week and we were able to come home Wednesday. We will be home for about a week and a half! Like last time, it has been an adjustment, but we are starting to settle in. She is loving playing with her little sister and big brother.
Happy fourth!
Ada is still VERY full of energy which is good but can be exhausting :) . Her cell count numbers appear to have bottomed out (she is in the nadir period) which is more or less the goal of the chemo. Now we wait for the counts to go back up. Hopefully they go up quick enough so that we get to take her home for a few days before the next treatment.
She loves to explore the hospital, bike around the grounds, play piano, make phone calls, play nurse (e.g. checks vitals, puts bandaids on, chart, etc), and hassle all the staff in the hallway (while they try to work)!
As always thanks for everyone's support, this is very challenging but Ada's spunk and everyone's support makes it so much easier!
As anticipated, yesterday we came back to the hospital for round 2 of chemo. This round should be similar to the first one (about 1 month in the hospital). We also received some of her bone marrow biopsy results. There is still some residual disease (cancer cells) following the first round of chemo. Although it is lower (about 5% vs 30%), this means Ada will need a bone marrow transplant. We will check her marrow again after this second round of chemo and hopefully the cancer cells are below 0.5% which will then mean she needs one more round of chemo followed by the bone marrow transplant process (which includes even more chemo to get rid of essentially everything so that the healthy donor stem cells will repopulate her blood). We are very fortunate that her brother, Oliver is a match. A transplant from a sibling is safer than from a stranger. They need to run a few more tests on him to make sure he doesn't have any infectious diseases or anything unsafe, but I'm optimistic.
Ada began chemo last night and as usual is doing very well! She woke up bright-eyed and ready to go at 7 am this morning and remains oblivious about what her body is going through. I have no doubt that her unrelenting energy and happiness will get her (and us) through this terrible nightmare.
Since Ada is a 4 year old with cancer she gets what she wants but this seems like a bridge too far....
We found out several good pieces of news today! Firstly, Oliver is a very good match for Ada if Ada needs a bone marrow transplant (Don't tell Oliver this though! We aren't bringing it up until we know we need to) . If we need to go down that path (we will hopefully know in a week or two) they would still need to do a few more compatibility tests but its very promising that he is a match so far and there are a few more matches in the https://bethematch.org/ bone marrow database. The second piece of good news is that Ada gets to stay home until Monday (barring any surprises) so we will have her here for a little over a week! The first few days she was home was amazing because she was home and was the first time in ~1 month that all of us (or even Tami and me) were at our house together...however, it was also very stressful for everyone to get acclimated to a new situation and for Tami and I to feel comfortable providing her medical needs at our house. Its also hard telling Ada that she can't play in the dirt, pick flowers, etc because she is still extremely susceptible to infections due to the chemotherapy. Regardless, we love having her home and everyone is adjusting to this new, temporary normal. We continue to be grateful for all the well wishes, gifts, and food people have been providing. Its uplifting to know so many people care and are willing to take time out of their day to read these posts, send well wishes, etc. Thank you all.
Tomorrow is Ada's birthday! She will be turning 4. We've celebrated twice already! Tomorrow is also a big day medically as she gets an injection of chemo directly into her cerebrospinal fluid (csf) and a bone marrow biopsy. She will be sedated for the procedure and last time the sedation + chemo injected into her csf caused her to be quite sick so it might be a tough birthday for her (no food for most of the day as well). The results of the bone marrow biopsy will trickle in over ~1 week and will inform her treatment plan. If they find a bunch of cancer cells that likely means we are headed towards a bone marrow transplant, if they don't see cancer cells then we are likely headed towards 4 more rounds of chemotherapy. We are very anxious for these results.
Due to covid, Ada is limited to 2 primary support people (me and Joel) and no visitors. Due to the length of her stay, we were able to get approval for 2 more so we added the grandmas to the list, but then they got covid... when it rains it pours. Thankfully they're ok and they will be allowed back at the hospital soon (we have to wait 20 days)! So after these 3 long weeks I think Ada is pretty sick of us. We were very fortunate to see some new faces that just happened to be outside when we went on our bike ride! Ada got to reunite with her siblings who both greeted her with BIG hugs, her Uncle Nate (visiting from Florida) and even her best friend, Oscar. Ada seemed unsure at first, but then she just seemed to pick up where she left off with everyone. The unofficial visits were short because the hospital halls and sidewalks just couldn't contain the excitement and energy, but it gave Ada some extra smiles. 😊 We also have to continue to be extra careful with germs.
We continue to wait for blood cell counts to go up. Hopefully it will start to happen within the next week. While we wait, it's been really difficult to not think about the future. We've been told to just take it day by day and be present in the moment. That is much easier said than done. Ada's diagnosis has changed from AML to AUL (acute undifferentiated leukemia). That is based on the type of cell that turned into cancer (it was a young one with ambiguous lineage). All this means is that even less is known about this specific disease since it is so rare. There just haven't been enough cases of AUL to know the exact treatments that may be needed and the prognosis. However, we've been assured that the AML treatment is more aggressive than ALL treatment so it is a good start. Also, she has responded well to the treatments so far (from what we can tell)... again we'll know more in a couple of weeks. At this point we don't know if Ada will need a bone marrow transplant. This is another unknown that I can't help but think/ worry about. To be prepared, her brother and sister just got blood sampled to see if they would be a potential donor match. We won't know for about one week. If they aren't matches, then we will turn to the National Marrow Donor registry to see if there are matches. Our hospital neighbor (a teenager undergoing AML treatment who is about 2 weeks ahead of Ada) is looking for a bone marrow match and is unable to find one. This has made me realize the importance of becoming a donor. So if you are able, become a donor! It is really easy (and painless...at least initially). My new way of thinking is "if my 3 year old can undergo chemo treatment and everything she has been through, I can handle a little bit of pain" especially if it can save someones life! Here is more info and details to become a potential donor:
The National Marrow Donor Program has managed the largest and most diverse marrow registry in the world for the past 30 years. You can register to join the registry at https://join.bethematch.org. The registration process will consist of a series of questions about your medical history to see if you meet basic qualifications. If you meet the basic qualifications, you will be asked to swab your cheek to provide a sample of your DNA. Your DNA will be added to the registry for potential matching with a patient. When you are matched with a patient, you will be contacted to donate. It could be weeks, months, or years before you are contacted to donate.
While I am at it, I also want to mention how important it is to donate blood! I have been a blood donor for several years and this whole experience has been truly enlightening. Your blood donation really does save lives (Ada has had a few transfusions already).
Ada had a pretty good night, she woke up at 9:30 PM and puked but slept well after that. Overall she has had less nausea (so far) than many patients so that is a plus! This morning she biked outside for around an hour then had her physical therapy (to keep her as strong as possible) and that said that she looks great! We are playing games on her iPad now and then either a nap or going to the play room after that!
Funny story about Oliver: last week I took him to an astronomy in the park event. We got to look at the moon and a binary star system though a telescope (good therapy for both of us). While there the folks leading the event shared that there was a lunar eclipse last night (the 15th). Oliver begged Tami to wake him up and show it to him, so she did say around 11PM and then they went back to bed. Two hours later Oliver wakes Tami up and he is very upset that Tami didn't wake him up for the eclipse! LoL. A very similar thing happened last year when I woke him up to see a comet.
The weather cooled down a bit and Ada's immune system is still strong enough so I got to take her outside! She had so much fun biking around. She will sometimes switch to pedal with only one leg which has to be good for maintaining as much strength as possible! :) Someone needs to direct me to the photo contest I can win with the pictures I took! ;) By the way if you are a kid with cancer you don't need to wear pants outside if you don't want to!
You may notice in some of the pictures that she has a tube on her face through her nose. This is an NG tube and is used to deliver nutrients and medicine straight to her belly. We are glad that she has this now as we don't have to fight her about taking medicine and eating!
Video of Ada roaring! :) https://photos.app.goo.gl/cw8UtDrDQykpG3gW7
In these challenging times we still have so much to be grateful for. We are so appreciate of all the love and support (supportive comments, meal train, etc) from friends, colleagues, and family near and far. Thank you all. We are grateful to live near a great hospital and have friends that work there to say hi to or give us tips. We are grateful for having great understanding/supportive colleagues and workplaces. We are grateful to have grandparents nearby who are able and willing to help us. We are grateful for the amazing nurses, doctors, child support specialists, etc that take such great care of Ada (and us). We are grateful for great neighbors who are always willing to help us and also give Oliver some extra attention. We are grateful for an amazing daycare for Ellie that is doing everything they can to accommodate our schedule and also giving Ellie a sense of normalcy. We are grateful for Oliver having an amazing school, teachers, and support staff, they are giving him extra love. I could go on and on.
It's going to be a long journey and we don't know what it looks like yet but thank you all for everything. What we do know is that Ada is amazing and that she is so loved by so many.
We never thought we'd be this family with a site like this. But we just never know what can happen. It started maybe a month or so ago. We started noticing a lot of bruises on Ada's legs and knees and a particularly large one on her lower back. Three year olds are wild and rough, but this was an unexplained change. We brushed it off as a typical 3 year old thing until we noticed that Ada was consistently saying her knees hurt, acting more docile than normal, sleeping more, and not eating much. She then had a few random fevers. After what I thought would be a simple doctor's visit that I thought would just result in "oh, she just has a tummy bug", our lives were turned upside down on May 4. We received a call at 11 pm that night with her blood results. I knew it was bad because the doctor said she'd only call if it was. She had extremely low platelets and red blood cells. And then we were told that her white blood cells "looked weird" under the microscope... consistent with a malignancy. We were told to bring her to the hospital in the morning so they can take a bone marrow sample to determine what exactly she has. The rest of the night was a blur of tears, fear, restlessness, disbelief and uncertainty. Ultimately we learned she has AML (acute myeloid leukemia) which is a blood cancer. She starts chemotherapy today. We are still awaiting genetic testing for her long-term treatment plan, but the most likely plan is that she will be in the hospital getting multiple rounds of chemo over the next 6 months with the chance to maybe come home for a few days every month or so. We are lucky to be close to UW Health, friends, and family. Feel free to share this link with others. Right now we don't know what we need in terms of support. Ada's grandparents are amazing and will be staying at our house to help. Ada is so strong, funny, smart, sweet, sassy, zestful, etc and we love her so much.
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